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Post by Admin on Apr 29, 2005 8:08:03 GMT -5
FOR IMMEDIATE RELEASE
NOTICE – Oklahomans from around the state have gathered to provide education, public awareness, and patient support for those suffering from a bacterial infection called "Lyme Disease". They've formed the Lyme Disease Support Group of Oklahoma (LDSG) as an informal group led by volunteers for the purpose of eliminating the isolation felt by those affected by Lyme Disease and other tick-borne disorders including STARI (a Lyme-like disease), helping its members to learn to cope, empowering members with support and information, and assisting family and friends of patients.
LDSG normally holds meetings on the 3rd Saturday of the month between 11:30am-1:30pm, Admission is free and open to the public but space is limited.
To RSVP, or for more information, email Janet@LDSG.org.
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LD Ok Support Group
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Post by LD Ok Support Group on Mar 23, 2006 14:06:53 GMT -5
Lyme Disease Support Group of Oklahoma Education, Public Awareness, and Patient Support Meeting Announcement Saturday ~ April 22nd in Okc, TBA in Tulsa, 2006 GUEST SPEAKERS & SPECIAL EVENT: Discussion Topic: Alternative Treatment Options. OKC- Guest Speaker: Dr. H, a Norman MD, with an alternative medicine practice in Norman and Tulsa, will discuss his self-diagnosis with Borreliosis a few years ago and his decision to began to treat himself with some alternative therapies including the use of samento and neurotransmitter therapy. Tulsa- Guest Speaker: LDSG Mbr Gail, will be talking about her experiences with the RIFE machine and what she learned at a recent Rife workshop. Medical staff: are encouraged to attend to learn about these new IV infusion options and tools. They will find it very informative especially if they are not accustomed to referring patients for IV therapy. TIME: 11:00am-12:30pm MEETING FORMAT: Open to Public ~ FREE LOCATION: OKC Robert M. Bird Library at OU Health Science Campus, Room TBA 1000 Stanton L Young Blvd, Oklahoma City, (map & directions upon request) Parking J is adjacent to the Library and is FREE on Saturdays. LOCATION: Tulsa OSU-TRMC, Room TBA Tulsa - Tenatively set for: Cafeteria - (may be moved to another location as necessary). OSU-TRMC (Tulsa Regional Medical Center) - 744 W. 9th, Tulsa, OK 74127 RSVP By 5pm the Friday before a meeting so that an adequate number of copies may be made. If you are new and would like a nametag let us know. Should you need assistance finding the meeting, call Janet. Contact: Janet Segraves ~ Janet@LDSG.org, 405-359-9401, or cell# 405-204-3100 LDSG, PO Box 6845, Edmond, OK 74013 LDSG as an informal group led by volunteers for the purpose of eliminating the isolation felt by those affected, helping its members to learn to cope, empowering members with support and information, and assisting family and friends of patients. LDSG interacts with both federal and state agencies, medical schools and health care communities, in addition to participating in public policy and legislative efforts, insurance and government assistance issues. www.LDSG.org
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From Janet Seagraves
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Post by From Janet Seagraves on Apr 21, 2006 16:08:56 GMT -5
Two meetings in April regarding Alternative Treatment Options, first one in OKC on 22nd, next one in Tulsa on 29th. PLEASE PASS THIS EMAIL TO OTHERS THAT MAY BENEFIT. Lyme Disease Support Group of Oklahoma Education, Public Awareness, and Patient Support Meeting Announcement Saturday ~ April 22nd in Okc, 29th in Tulsa, 2006 GUEST SPEAKERS & SPECIAL EVENT: Discussion Topic: Alternative Treatment Options. OKC- Guest Speaker: Dr. H, a Norman MD, with an alternative medicine practice in Norman and Tulsa, will discuss his self-diagnosis with Borreliosis a few years ago and his decision to began to treat himself with some alternative therapies including the use of samento and neurotransmitter therapy. Tulsa- Guest Speaker: LDSG Mbr Gail, will be talking about her experiences with the RIFE machine and what she learned at a recent Rife workshop. Medical staff: are encouraged to attend to learn about these new IV infusion options and tools. They will find it very informative especially if they are not accustomed to referring patients for IV therapy. TIME: 11:00am-12:30pm MEETING FORMAT: Open to Public ~ FREE LOCATION: OKC Robert M. Bird Library at OU Health Science Campus, Room TBA 1000 Stanton L Young Blvd, Oklahoma City, (map & directions upon request) Parking J is adjacent to the Library and is FREE on Saturdays. LOCATION: Tulsa OSU-TRMC, Room TBA Tulsa - meeting will be held at Johnnie's at 51st & Harvard (Harvard & I-44) for Saturday, April 29th, 11:00-1:00. If you need directions, call myself or Gail Evans 918-605-1013. RSVP By 5pm the Friday before a meeting so that an adequate number of copies may be made. If you are new and would like a nametag let us know. Should you need assistance finding the meeting, call Janet. Contact: Janet Segraves ~ Janet@LDSG.org, 405-359-9401, or cell# 405-204-3100 LDSG, PO Box 6845, Edmond, OK 74013 LDSG as an informal group led by volunteers for the purpose of eliminating the isolation felt by those affected, helping its members to learn to cope, empowering members with support and information, and assisting family and friends of patients. LDSG interacts with both federal and state agencies, medical schools and health care communities, in addition to participating in public policy and legislative efforts, insurance and government assistance issues. www.LDSG.org
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Post by Patti on Apr 23, 2006 10:19:29 GMT -5
Thank you for posting this Janet.....we've heard many good things about you and appreciate all that you do to bring awareness to Lyme disease.
I hope that your event yesterday was a success and wish the same for the upcoming one in Tulsa. Please feel free to post as much here as you like......we are getting more and more Okies all the time and I know they especially appreciate it.
Good luck, as always! Patti
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Post by Sidney on Mar 27, 2007 15:50:41 GMT -5
Dear Members, below is an update on the federal Lyme legislation. Janet Segraves LDSG: Lyme Disease Support Group of Oklahoma Providing Education, Public Awareness, & Patient Support Janet@LDSG.org * 405-359-9401 * www.LDSG.org PO Box 6845, Edmond, OK 73083 Please use EMAIL: janet@pmt.net -------------------------------------------------------------------------------- From: Lia McCabe [mailto:lmmccabe@hvc.rr.com] Sent: Monday, March 26, 2007 11:40 AM Subject: LDA - CALL TO ACTION 2007 #3 CALL TO ACTION 2007 #3 (March 26) from Pat Smith, President, Lyme Disease Association, Inc. (LDA) ¡ÌCheck out LDA¡¯s expanded new Federal Legislation webpage lymediseaseassociation.org/HR741/HR741.htmlEverything is there to make it easy for you to keep informed and to contact your congressperson, including sample meeting agenda and hand-in materials. IMMEDIATE ACTION NEEDED: GROUP SIGNON TO SUPPORT BILL Who: All groups (Lyme, non-Lyme, & corporations) What: Sign up to support federal legislation HR 741 Where: LDA website This is a NEW bill¨Corganizations that signed up in support of bill last year need to sign up again for HR 741 Go to lymediseaseassociation.org/HR741/HR741.html#Organizations Click on link for organization SIGN UP Lyme groups and non-Lyme group or corporations can sign up to support the bill A list of groups supporting the bill will appear on the website soon. When: As soon as possible Why: We need to let legislators know we have most Lyme groups on board the legislation to have a chance of it being considered for a vote. Last year we had over 100 groups signed in support. This year we want to get businesses on board, too. We can use this to get media attention also. UPDATES & CONTINUING ACTIONS FEDERAL LEGISLATION All individuals and groups continue to get your legislators as cosponsor on the bill. We want to have a big total by April 15 for publicity purposes. We have 31 cosponsors to date. Congratulations VT at 100%, RI at 100% and MD at 75% of house reps signed onto HR 741 to date. 1. Go to lymediseaseassociation.org/HR741/HR741.html#Co-sponsors2. Click on your state to see current cosponsors. 3. Individuals focus on your congressman. 4. Organizations focus on all congressmen in your advocacy area. IDSA GUIDELINES PETITION Congratulations! We have surpassed 25,000 signatures to date on the Guidelines petition. We have generated much publicity with the petition and plan to use is in the near future to further the Lyme disease cause¡¯s agenda to revoke the IDSA guidelines &/or to have them removed from the CDC website. Continue new sign-ons. 1. Click on lymediseaseassociation.org/ and scroll down to SIGN PETITION HERE 2. Or click on SIGN PETITION HERE to see number signed up or to sign up if you have not done so. RESOLUTIONS Twenty-three (23) groups have adopted a formal resolution to date asking for the revocation of the IDSA guidelines. 1. Click on lymediseaseassociation.org/ and scroll down to ¡°All Lyme disease groups¡± 2. Or click on All Lyme disease groups: for resolution 3. Adopt it at your next meeting. Send LDA a copy to Lymeliter@aol.com FORBES We have been told that Forbes was deluged with letters. A number of entities have received response letters from Forbes. Some have indicated the issue is being explored. If you have not written yet, please write now 1. For article, click link & then sign in members.forbes.com/forbes/2007/0312/096.html2. See CALL TO ACTION 2007 #2 issued Feb. 25 for details Together, we are making a big difference!
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Post by Sidney on Aug 28, 2007 11:33:49 GMT -5
Dear LDSG Members, Quick note to let all of you know that we’ve schedule the next support group meeting for Sept. 15th, 2007 in Tulsa at OSU Med School between 10:30am and 12:00pm. Kathleen, Tulsa Facilitator, is confirming the meeting room this week and we will post the exact room number along with a meeting agenda and location directions at the link below: www.ldsg.org/index.php?id=20 There has been a lot going on in the Lyme community the past couple of months, beginning with IDSA releasing new guidelines, CID journal published article on long-term antibiotic treatments, President Bush’s announcement of contracting Lyme, and all the other recent media coverage. So please try to attend. For those that aren’t well enough to travel, a meeting recap will be posted to the website at a later date. As always, the meeting is free and open to the public. Feel free to invite others that might benefit, including our medical professionals, and we encourage family members to join in and network with others that are in similar circumstances. Janet Segraves LDSG: Lyme Disease Support Group of Oklahoma Providing Education, Public Awareness, & Patient Support janet@ldsg.org * 405-359-9401 * www.ldsg.org PO Box 6845, Edmond, OK 73083 LDSG is an informal group led by volunteers for the purpose of providing education, public awareness, and advocating for those suffering from bacterial infections such as Lyme Disease, STARI, and other tick-borne disorders. Our mission is to eliminate the isolation felt by those affected, empower members through information and support, exchange experiences and coping skills, and assist family and friends of patients. LDSG interacts with federal and state agencies, medical schools, health care communities, research centers and educational venues, national organizations and foundations; and participates in public policy and legislative efforts, insurance and government assistance issues. Meetings are normally 11:00am-12:30pm rotating between Oklahoma City and Tulsa. Admission is free and open to the public. For more information visit www.ldsg.org or email janet@ldsg.org.
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Post by Sidney on Nov 29, 2007 15:28:05 GMT -5
Dear LDSG Members, I’ve been contacted by a lab out of Florida in regards to a new test recently certified by the state of Florida that can identify the spirochete (Bb) rather than antibody reaction. Just started to do my due diligence but wanted to give everyone a heads up. Per my conversations with their president they are willing to discount the cost of testing if done in bulk. They are limited to a maximum of 25 tests per week, and the blood must be drawn Mon-Wed and sent overnight to assure best results. I’m looking for group members willing to participate in the bulk testing in order to support our efforts in getting Lyme recognized in Oklahoma. The testing should run around $150 and I don’t know yet about insurance reimbursement. www.lddtesting.com/ - They promote the test as: A LYME ANTIGEN TEST BY FLOW CYTOMETRY - that is definitive in the detection of Borrelia burgdorferi, the causative agent in Lyme Disease. As I get more information I will keep everyone informed. Janet Segraves LDSG: Lyme Disease Support Group of Oklahoma Providing Education, Public Awareness, & Patient Support janet@ldsg.org * 405-359-9401 * www.ldsg.org PO Box 6845, Edmond, OK 73083 LDSG is an informal group led by volunteers for the purpose of providing education, public awareness, and advocating for those suffering from bacterial infections such as Lyme Disease, STARI, and other tick-borne disorders. Our mission is to eliminate the isolation felt by those affected, empower members through information and support, exchange experiences and coping skills, and assist family and friends of patients. LDSG interacts with federal and state agencies, medical schools, health care communities, research centers and educational venues, national organizations and foundations; and participates in public policy and legislative efforts, insurance and government assistance issues. Meetings are normally 11:00am-12:30pm rotating between Oklahoma City and Tulsa. Admission is free and open to the public. For more information visit www.ldsg.org or email janet@ldsg.org.
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Post by Sidney on Jul 5, 2008 11:38:38 GMT -5
Dear LDSG members, Below is a short news release about a medical abstract which Dr. Allen Steere happened to participate. It is HUGE… he actually acknowledges that there is the suggestions through the research they’ve recently conducted that B. burgdorferi (Bb) remains alive throughout the illness. To think that after almost 25 years of Dr. Steere being in the opposing camp of Chronic Lyme that he just might see the light. As soon as I find more I will let all you know. Janet Segraves LDSG: Lyme Disease Support Group of Oklahoma Providing Education, Public Awareness, & Patient Support janet@ldsg.org * 405-359-9401 * www.ldsg.orgPO Box 6845, Edmond, OK 73083 Antigens of Borrella burgdorferi Recognized during Lyme Disease Appearance of a New Immunoglobulin M Response and Expansion of the Immunoglobulin G Response Late in the Illness by Joseph E. Craft, Duncan K. Fischer, Grant T. Shimamoto, and Allen C. Steere Departments ofInternal Medicine and Molecular Biophysics and Biochemistry, Yale University School ofMedicine, New Haven, Connecticut 06510 Abstract Using immunoblots, we identified proteins of Borrelia burgdorferi bound by IgM and IgG antibodies during Lyme disease. In 12 patients with early disease alone, both the IgM and IgG responses were restricted primarily to a 41-kD antigen. This limited response disappeared within several months. In contrast, among six patients with prolonged illness, the IgM response to the 41- kD protein sometimes persisted for months to years, and late in the illness during arthritis, a new IgM response sometimes developed to a 34-kD component of the organism. The IgG response in these patients appeared in a characteristic sequential pattern over months to years to as many as 11 spirochetal antigens. The appearance of a new IgM response and the expansion of the IgG response late in the illness, and the lack of such responses in patients with early disease alone, suggest that B. burgdorferi remains alive throughout the illness.
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