Oklahoma Lyme Disease Support Group

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/

12/15/2025

★ ALERT ★ ~ The U.S. Department of Health and Human Services (HHS) has announced a roundtable discussion titled "Invisible Illness — Leading the Way with Lyme Disease", scheduled for TODAY - December 15, from 1:00p-3:30p CST)
(2:00–4:30 PM EST / 11:00 AM–1:30 PM PT/Pacific).

The event will be broadcast live to the public on the HHS YouTube channel:

https://www.youtube.com//streams

The session will be convened by Secretary Robert F. Kennedy Jr., along with senior HHS leadership, Members of Congress, clinicians, researchers, innovators, and patient advocates.

The roundtable will focus on several topics, including:

• Early detection of Lyme disease
• Coordinated care approaches
• Next-generation diagnostic tools
• Federal priorities for Lyme disease and related chronic conditions
• Organizers note that the conversation will highlight the roles of researchers, transparency in decision-making, and patient participation in shaping solutions.

SOURCE: US Department of Health and Human Services

12/08/2025

For those of you that didn't catch 60 Minutes TV Show from last week... a group of VERY SMART high school students competed in the annual international IGEM. Why do we care - they may find answers & solutions Lyme/TBI scientists worldwide have been chasing for decades. Their project involved using CRISPER to detect Lyme (Bb & it's effects on protein) within 2 days of bite/infection; PLUS they believe their work will not only allow for quicker treatment but also development of better treatment for those patients that went undiagnosed for decades possible. The 60Min Story is more about the kids & the IGEM completion BUT it's still brings attention to LD & their discoveries will be Game-changers for us. Their group was nominated for 10 different awards & won 1st for their "website"....

Student Group - Lambert-GA https://share.google/gudasZFyhEhRx6pmq

60 Mins Show segment: https://share.google/JALd93SbaVwyxo3GD

LD Org has also written an article regarding the Students, IGEM, & what it means for us....

https://www.lymedisease.org/georgia-teens-crispr/

CDC's Annual Report "Emerging Infectious Diseases -  supplement, now recognizes "Chronic Lyme" as MORE than a "post-trea...
11/17/2025

CDC's Annual Report "Emerging Infectious Diseases - supplement, now recognizes "Chronic Lyme" as MORE than a "post-treated syndrome".

After more than 50 years, the CDC has finally recognized what Lyme patients have been saying for decades: persistent symptoms after Lyme infection are real, medically significant, and now officially part of the federal framework for Infection-Associated Chronic Conditions and Illnesses (IACCIs).

In its new Emerging Infectious Diseases supplement, the CDC states: “Suspected mechanisms include continued immune stimulation from antigens or continued infection in a sequestered body site that cannot be sampled… autoimmune responses, microbiome dysbiosis, persistent tissue damage, disordered coagulation, and disrupted nerve signaling.“

“Chronic sequalae considered IACCIs include various combinations of infection-associated organ damage, autoimmune conditions, and persistent unexplained systemic symptoms, such as debilitating fatigue, postexertional malaise, cognitive impairment, musculoskeletal pain, and sleep disorders“

For anyone living with chronic Lyme symptoms, this acknowledgment is monumental. This moment is also deeply connected to Col. Nicole Malachowski, who served as the sole patient representative on the National Academies of Sciences, Engineering, and Medicine committee that produced the landmark Lyme IACCI report — the same report cited by the CDC in this publication. Her leadership helped push the science forward, ensure the patient voice was heard, and open the door to federal recognition of chronic Lyme.

FYI: While pulling up the links below I noticed a few of the CDC's webpages disappeared the 2nd time I went to view them (or maybe they're being updated to reflect the new info).

https://www.cdc.gov/chronic-symptoms-following-infections/about/index.html

https://www.cdc.gov/lyme/signs-symptoms/chronic-symptoms-and-lyme-disease.html

https://wwwnc.cdc.gov/eid/article/31/10/25-1187_article #;

For more info about this revelation read - Recent Announcement on this topic by one of the Nat'l Lyme Orgs:
https://www.lymedisease.org/cdc-chronic-lyme-iaccpac/

Credit: Thank You to Chuck Moon, long-standing LDSG member, for bring this to my attention so quickly. Greatly appreciated.

End

Many types of infections can leave people with symptoms that last even after appropriate treatment.

Great news ... FDA has APPROVED IGeneX's IgG ("Chronic"*) Antibodies Test Kit called iDart™ Lyme IgG ImmunoBlot Kit.  (*...
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.

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

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

MARCH for Mental Health Privacy - Saturday March 22, 2023 Meet at the Oklahoma Healthcare Authority (OHCA) 4345 N. Linco...
03/15/2023

MARCH for Mental Health Privacy - Saturday March 22, 2023

Meet at the Oklahoma Healthcare Authority (OHCA) 4345 N. Lincoln Blvd OKC @ Noon & join us for a march to the Oklahoma State Capitol.

It's bad enough that the Gov got access back in 2009 to patients' pain medication records (PMP), which they've used to abused & go after patients' prescribers, change laws, & leave those patients without adequate treatment. They now want access to mental healthcare patients' records. What's said to a therapist should stay private. We can't allow this to happen.




To all members & their care providers, March 22nd, 2023 is a critical day for those with Lyme &/or chronic pain issues t...
03/14/2023

To all members & their care providers,

March 22nd, 2023 is a critical day for those with Lyme &/or chronic pain issues that also use some sort of mental health services (ie: help w/depression, anxiety, etc). If the Gov has their way by passing this purposed ruling, then when Oklahoma Health Care Authority (OHCA) implements it - kiss your privacy goodbye....

Oklahoma Health Care Authority (OHCA)
https://www.counselinginstitute.org/mental-health-in-oklahoma

At the bottom of the article is a list of contacts - reach out (email) them & express your concerns in hopes they will not pass, nor implement any similar position.

The Oklahoman's guide to mental health

Dr. Charles Ray Jones, a hero in the Lyme Community since the 1970s, has recently passed away at 93. Although he was bes...
06/09/2022

Dr. Charles Ray Jones, a hero in the Lyme Community since the 1970s, has recently passed away at 93. Although he was best known for treating children from across the country his contributions over the decades have benefited us all. He will be greatly missed.

17 years after publication, this article from the Lyme Times' archive offers still-fresh, instructive information not readily available elsewhere.

12/05/2020

Looking for a Lyme-friendly Primary Care Physician (P*P) in OKC metro willing to treat your Lyme (&/or work w/your out-of-state LLMD)? Happy to announce we've got an MD Internist willing to help. Please send me an email & I'll forward the info: Janet.Segraves@gmail.com

Reminder: Please do NOT post any medical professionals' name or contact info online, it's not only against our Group's policy but also the entire Lyme community at large.

PAIN PATIENTS ALERT!  IMMEDIATE ACTION REQUIRED! Okla bills SB1918 & SB1512 are NOT being presented for a Vote on Senate...
03/09/2020

PAIN PATIENTS ALERT! IMMEDIATE ACTION REQUIRED!
Okla bills SB1918 & SB1512 are NOT being presented for a Vote on Senate Floor (Mar 12th) because there's "not enough interest to secure passing". These bills are VITAL in allowing Pain Practitioners to provide the level of care & treatment to sustain a quality of life the Chronic Pain Patients deserves.

PLEASE CONTACT your Okla legislators TODAY (& thru Wed) and ask that they SUPPORT these 2 bills!
Specific Action Needed: that Sen. Kim Davis (R), is that the bills.get add to the Agenda for a Floor Vote.

To Find Your State SENATOR:
http://www.oksenate.gov/FindMyLegislature.aspx?Address=&City=&Zip=
FULL List:
http://www.oksenate.gov/senators/
EMAILS:
http://www.oksenate.gov/email.aspx
LEADERSHIP TREE/Breakdown:
http://www.oksenate.gov/senators/

To Find Your State HOUSE REP :
https://okhouse.gov/Members/Default.aspx

WHY Support these 2 bills:
both are regarding Practitioners protection against Civil Liabilities & Criminal Prosecution provided...
- SB1918:.... as long as they prescribe within FDA Approved maximums.
- SB1512:... "Nothing in this section shall be construed to supersede the provisions of Section 2-551" of Title 63, aka upholds & reinforces
existing laws.

ADD'L SPECIFIC ACTION REQUIRED:

ST Senator Kim David (R), Majority Floor Leader, representing Dist. 018 covering/serving portions of Cherokee, Mayes, Muskogee, Tulsa & Wagoner Counties needs to add both bills SB1918 & SB1512 to the Agenda for March 12th's Senate Floor Vote, abd to vote YES on passing the bills.
Davis' Website:
http://www.oksenate.gov/FindMyLegislature.aspx?Address=&City=&Zip=

BILLS HISTORY:

- SB1918 went before Health & Human Services Committee on FEB 17th and Passed unanimously.
Add'l SB1918 Details & History:
http://www.oklegislature.gov/BillInfo.aspx?Bill=SB1918&Session=2000

- SB1512 went before Judiciary Committee on FEB 25th and Passed 9 to 3, but there was lots of blow back. 3 that voted No asked questions, implied it was a loop hole & blanket immunity, would take away AG's ability to prosecute "even when drs are following all the rules", etc. Standridge offered to revisit some of the language to clear up any perceived loophole. VOTE:
Yea (For bill): Dahm, Howard, Leewright, Murdock, Paxton, Sharp, Weaver, Jech, Daniels
Nay (Against): Boren, Brooks, Floyd
AMENDED: Feb 25th (posted to website 3/6)
coming out of Judicial Committee:
1. TITLE has been stricken, remains without Title;
2. The "emergency clause" (last item in bill) also stricken - that would have made it law/go into affect upon Governor's signature vs November 1st (if passes & signed into law).
Important part of bill - sections "K-L" at bottom of page 7 remains untouched.
Add'l SB1512 Details & History:
http://www.oklegislature.gov/BillInfo.aspx?Bill=SB1512&Session=2000


Legislative Talking Points SB1512 &. SB1918

SB1918 & SB1512 are necessary to balance some of the recent overreaching actions that have been implemented based on an “Opioid Crisis” narrative that blames prescription opioids. Even though recent research¹ is proving that prescriptions are not the main contributing factor, pain patients and their practitioners are still the ones taking the brunt of the suffering and the affects of the majority of the unintended consequences. Under this false narrative multiple new laws, regulations, and guidelines were put into place at both federal and state levels, along with the Media placing the blame on Pain Prescribes for starting, or at least contributing to, the opioid crisis when the overwhelming majority of practitioners go to great lengths to minimize patient risks while still trying to provide some level of treatment that will allow their patients to experience a basic quality of life.

Even with all the new medical breakthroughs and discoveries every day in the field of medicine our medical professionals are still just "practicing medicine", and I emphasize "practice"… there is no absolutes or one treatment fits all; and Patients best interest is always served when their medical practitioners are allowed to treat each patient as the unique individuals they are to the best of the medical practitioners ability WITHOUT constantly being under attack. Previous to the past few years Practitioners were able to prescribe appropriate treatments that made it possible for many of their patients to continue to hold down a job and be contributing members of society. Where as now these same chronic pain patients can’t work, are unnecessarily suffering and barely getting by, and for the most part have been labeled and treated as Addicts. Pain Practitioners and their patients are being harassed by insurance companies requiring additional justification and documentations², national chain pharmacies are denying & refusing to fill Schedule II scripts, in some cases prescribers' are being banned, pain Practitioners are being defamed in and by the media, and yet are still expected to practice medicine with the daily threat that their freedom is about to be taken away.

Although Title 63 may already provide for some allowances for doctors and other prescribing practitioner to do their jobs by recognizing how complex it is to take care of chronic pain patients, SB1512 will provide the needed reinforcement in the law thus letting doctors provide the proper care in the best interest of their patients including the customized treatments their patients desperately require. SB1512 will provide a step in the right direction to correct the misinformation, empowering Pain Practitioners that have dedicating their medical careers to easing the suffering and improving the quality of life of their chronic pain patients.

Oklahoma State Senate's Website where you can follow the introduction of bills, committee actions, and votes on the bills.

Address

Edmond, OK

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