Oklahoma Lyme Disease Support Group

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Edmond, OK
Oklahoma Lyme Disease Support Group

Providing support and information for those suffer from Lyme Disease in Oklahoma. All volunteer, Free mbrship, & open to public. Please call/email for info

Lyme Disease Support Group (LDSG) of Oklahoma is an informal group led by volunteers for the purpose of providing education, public awareness, and advocating for those suffering from Lyme Disease/STARI and other tick-borne bacterial infections. 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. Although ‘Lyme’ is prominent in the name, LDSG has expanded to include those suffering from STARI (Masters Disease), Babeiosis, Bartonella, Ehrlichiosis, RMSF, and other tick-borne illnesses (TBI). Several of the LDSG members have contracted at least one of these TBIs as co-infections in addition to their Lyme. Approximately 80% of LDSG members have developed more advanced and complex cases of Lyme Disease including Neuro-Borreliosis (affecting the brain and central nervous system) due to the prolong period they went undiagnosed and/or didn’t receive appropriate treatment. You are also welcome to join us on our Facebook group page at https://www.facebook.com/groups/okldsg/

09/07/2024

Great news ... FDA has APPROVED IGeneX's IgG ("Chronic"*) Antibodies Test Kit called iDart™ Lyme IgG ImmunoBlot Kit. (*vs the common testing for IgM "Acute" antibodies that are active mainly during initial exposure/infection; IgG Chronic antibodies are detectable weeks to YEARS POST exposure/infection.)
The iDart™ Kit testing utilizes serum/blood sample against all 31 bands ~ incl the vital bands 31 & 34, that were removed in the 1990s because of their sensitivity during development of a Lyme vaccine that never went to market, and yet to this day these crucial 2 bands are still excluded in traditional testing.
iDart™ kit results/interpretation is also based upon the NEW criteria (not CDC's that misses so many "positive" cases)... which will greatly improve detecting more cases of infection & thus starting treatment so much sooner.
The IGeneX's Testing Kit has been used internally since 2017, it will ONLY be available thru labs who perform Lyme diagnostic testing (Serum/Blood sample) - vs as an OTC/Over-the-Counter Home Kit direct to consumers.
Make sure when getting tested - you ask for the iDart™ kit! To read more:

The test features 31 Lyme antigen bands, which are more antigen bands than any other Lyme immunoblot test on the market.

08/24/2024

Pat Smith, LDA's beloved Founder, has recently passed away; LDA will be shutting its doors in December.

So sad to hear of Pat's passing. I've personally known Pat since 2004 & considered her a friend not just a colleague. She will be greatly missed.
I'm shocked & absolutely horrified that LDA is closing its doors in December. The Lyme4kids division as of now will be taken over by a Colorado affiliate, but so far haven't heard about the rest of the organization's operations - like it's legislative & advocacy efforts, LDA annual conference, research & fundraising, or online resources (library/databases), etc - whether any of those divisions are being picked up/taken over by another national or state groups.
PRAY that what Pat & her team has built over the last 25+ yrs of blood, sweat, & tears isn't just broken-up & disappear. As I learn more I'll post/update it here our group's LDSG pages; until then here is LDA's public statement/obit:

https://www.lymedisease.org/pat-smith-indefatigable-obit/

Okla LDSG Facebook presence:
Main - www.facebook.com/okldsg
Group: for Oklahoman mbrs (& Texas Panhandle), to join go to link below & submit request
www.facebook.com/groups/okldsg

Janet,
Founder of LDSG for Oklahoma

To say she was a powerful force for good in the Lyme disease community is an understatement.

04/18/2024

New Lyme documentary just released (Apr2024) that is EXCELLENT, please share....

Years of pain, paralysis and fear - without a diagnosis. For a long time, medicine seemed to ignore Lyme disease. The film accompanies several patients as th...

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Edmond, OK

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http://www.ldsg.org/

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