Oklahoma Lyme Disease Support Group

For those that haven't heard, LymeDisease.Org announced today three remarkable individuals in our Lyme Medical & Research community — Dr. Alan MacDonald, Dr. Alex Shikhman, and Dr. Charles Crist--have passed away. I don't have any further details. To read more about their backgrounds & contributions of these dedicated individuals go to:
Dr. Crist, MO - https://www.lymedisease.org/charles-crist-obit/
Dr. MacDonald, - https://www.lymedisease.org/in-memory-dr-alan-macdonald/
Dr. Alex Shikhman, CA
https://www.lymedisease.org/dr-alex-shikhman/

LymeDisease.org is a 501(c)(3) nonprofit organization dedicated to empowering the Lyme disease community & a wonderful resource. Learn more at www.lymedisease.org.

LymeDisease.org - Advocating nationally for quality accessible healthcare for patients with Lyme disease LymeDisease.org's mission is to prevent Lyme disease, prevent early Lyme disease from becoming chronic and to obtain access to care for patients with chronic Lyme disease.

★ 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

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/

Lambert-GA

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

About Chronic Symptoms Following Infections 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. (*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:

IGeneX Lyme ImmunoBlot test receives FDA clearance 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 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

Pat Smith, indefatigable Lyme advocate, has passed away 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....

Lyme disease and the fight for recognition | DW Documentary 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. 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 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.

Mental Health in Oklahoma - Oklahoma Counseling Institute 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 best known for treating children from across the country his contributions over the decades have benefited us all. He will be greatly missed.

Dr. Jones's still-relevant advice on children with Lyme disease 17 years after publication, this article from the Lyme Times' archive offers still-fresh, instructive information not readily available elsewhere.

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: [email protected]

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.