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Emerging from the Abyss
Neurological Lyme disease stole my life. A 3-year delay from diagnosis to IV antibiotics left me with permanent damage and exposed systemic gaps in care. I founded LymeTV to educate doctors and patients about the shifting paradigm impacting tick-borne disease research.
Story Overview
When neurological Lyme disease invaded my brain, it caused seizures, severe cognitive decline, and stole my independence. Despite an eventual diagnosis, a devastating three-year delay in accessing IV antibiotic therapy left me with permanent neurological damage. My struggle exposed systemic gaps in the approach to Lyme disease, where diagnostic blind spots and limited medical education leave countless patients without timely care. Refusing to let others navigate this darkness alone, I founded LymeTV, while in the midst of my own crisis. We inform clinicians and empower patients with the advancing research that is shifting the paradigm for tick-borne disease care.
Target Audience
My target audience is clinicians, who need to understand that patients presenting with neurological Lyme disease require tailored treatment. I also want to inform patients about the systemic problem so that they can advocate on their own behalf.
Priority
Current clinical guidelines restrict intravenous ceftriaxone to life-threatening Lyme disease, abandoning patients with non-critical yet debilitating neurological symptoms—such as severe cognitive impairment and neuropathies—when oral doxycycline sometimes fails. My top priority is expanding treatment guidelines to permit access to IV ceftriaxone for these more common neurological presentations before irreversible damage occurs. We must also accelerate clinical trials to bring high-efficacy in vitro candidate antibiotics into active patient care. Updating clinical protocols and broadening our therapeutic arsenal provides a robust pathway to alleviate chronic disease burden, restore functional lives, and prevent long-term disability.
Thank you for sharing your story to help others receive the treatment you were denied. So admirable
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Honored to advocate alongside you with the Center for Lyme Action, Adina. Thank you for sharing your journey. We will succeed in finding a cure! XO
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Adina, your story maps directly onto something I've been trying to work out: what does it actually cost — in dollars, not just outcomes — when a patient is denied IV ceftriaxone because their case doesn't meet the "life-threatening" guideline threshold, and ends up with permanent neurological damage instead? I'd guess the long-term cost of managing that damage is far higher than the treatment that was denied, but I don't have real numbers to back that up. I also understand your family had the resources to keep searching and pay out-of-pocket when standard care hit a dead end — do you know what patients without that flexibility typically do instead? I want this tool to be able to model the real cost of a guideline restriction, not just describe it.
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I love how you've taken a negative and turned it into a positive by using your struggles to help others. You're truly an inspiration for everyone!
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Grateful to know you, Adina! Sharing far and wide!
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Love you, and am honored to be a friend, and share some of this journey with you.
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Thank you for sharing your story.
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Thank you for not only advocating for yourself, but also selflessly advocating for others. Keep pushing for awareness, education, and a cure!
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Adina, I really relate to the idea of coming out the other side of something and realizing that surviving it isn't quite enough anymore, you need to do something with what you learned. A three-year delay doesn't sound enormous on paper until you understand what neurological Lyme can accomplish in three years. The fact that you turned permanent damage and an unbelievably hard-earned education into LymeTV and physician/patient education gives the whole story another dimension. You couldn't get those years back, so you started trying to keep somebody else from losing theirs. That means something, thank you a million times over for your efforts!
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MY HUSBAND DIED FROM 4 TICK-BORN DISEASES & ON HIS 10TH BRAIN AUTOPSY IN 11 YEARS THIS NOV. 2026.
my late husband, JACK GORDON, IOWA, was 1st diagnosed with essential tremors for 5 yrs; then PARKINSON'S for 5 years; then dementia crept in bad!
during the last 2-3 yrs, he was hallucinating in his sleep and visually seeing things NOT there.
the story i wrote about his/my life can be found here at this site:
https://durayresearch.wordpress.com/our-work/...sease-patients/
the results of his 1st brain autopsy can be found here on DURAY RESEARCH FOUNDATION where they found Jack's brain made world-wide history having 2 diseases NEVER found together before in a brain autopsy:
· Lyme/tick disease;
· Lewy body dementia having the visual and very violent hallucinations like Robin Williams had;
· a cluster of filarial nematode parasitic worms in brain having LYME TOO!!
· Alan became ill before he got his part written up for publication.
· So I've been working with Dr. Marna Erikson, Univ. of Minn., who did Jack's 2nd brain autopsy.
· She found 2nd TICK-borne disease:
· Bartonella, 2 species!
· cat scratch disease and
· other name represents lice/homelessness, which neither of us ever had!
· Hopefully later this year after commitments, Marna can work on getting this written up and submitted to a scientific medical journal for publication as Alan M. promised me on 1st autopsy.
· it took 1 YEAR TO GET HER FINISHED RESULTS WITH ME PURSUING THIS VS. HER GIVING THESE TO ME WITHOUT ASKING!
· i paid $10,000 for Marna's autopsy of Jack's brain!
· I gave a very generous donation to DURAY RESEARCH FOUNDATION so other families could have the SCIENTIFIC EVIDENCE they needed.
· Frankly, both orgs FAILED ME!
· Jack was diagnosed 2 nights before he passed away with:
· cancer in his lung & liver!
· his death certificate shows he died from LUNG CANCER; they made a mistake earlier adding COLON cancer in another area.
· I caught their error & had that corrected!
· I'm going to work on amending it for final time with ALL BRAIN AUTOPSY RESULTS ABOVE that contributed to Jack's death.
· EACH requires me to go before a judge for a COURT ORDER to get his death certificate amended and CDC statistics!
· IOWA DEPT. OF HEALTH informed me, "books are closed on IOWA CDC statistics; they will NOT open them to add Jack's positive case to them"!
· WISH ME LUCK; It's been 3 years to get this far folks!
· To date, I've never gotten any of the Iowa medical folks to work with me on getting Jack's death certificate AMENDED to all the things CONTRIBUTING FACTORS to his death!!
· ps..Minn. Dr. suggested I get my blood tested for Bartonella too, the 2 species sending my blood to no. 1 bart lab in USA, GALAXY, NC!!
· Guess what? I'M POSITIVE FOR BARTONELLA, BOTH SPECIES TOO! waiting to find out treatment plan now!
· Bottom line EVEN though you are diagnosed with PARKINSON'S, there may be other diseases INVOLVED in your illness like my husband's was.
· I had his brain autopsied because of his weird behavior that my gut said, Betty, find out what he has vs. what he does NOT HAVE! I did; I'm happy with the 2 autopsy results.
· https://durayresearch.wordpress.com/our-work/...rative-disease/
· 2.5.2026 updated!
· 5-6 yrs. Ago I started working with BAY AREA LYME FOUNDATIONS “BIO BANK”, LIZ HORN DIRECTOR. JACK’S BRAIN HAS BEEN TO 10 STATES & 10 RESEARCH LABS.
· Jack’s brain is now at Harvard for his 9th brain autopsy. ON HOLD THERE…. They have a “hotter” case they put as no. 1 priority over jack’s case.
· 10th one is at GEORGE MASON UNIV., FAIRFAX, VIRGINIA, since last summer.
· HOPEFULLY, ONCE THESE 2 TB RESEARCH LABS ARE DONE, THEY WILL WRITE A COMBINED 8 LAB CASE STUDY AND PUBLISH IN A MEDICAL JOURNAL AS ALAN MACDONALD PROMISED ME NOV. 2015 !!!
· Jack’s brain has been to 10 states, 10 research labs plus 1 year at des moines univ. osteopathic college for study purposes in the 12 yrs. since he died!
· I would have NEVER believed it would take this long to get a case study written up and PUBLISHED in a medical journal to help other tb patients/families to educate them as evidence on their loved one’s symptoms and what else it COULD BE!
· JACK AND I BOTH NEVER SAW AN EMBEDDED TICK.
· WE DID NOT HAVE ANY BULLS-EYE RASHES EITHER!! Grrr. ************************************************
· 8.19.26--ANOTHER SUBJECT:
· NEVER DONATE MONEY FOR BRAIN RESEARCH UNTIL THE CASE STUDY HAS BEEN WRITTEN AND PUBLISHED IN A MEDICAL JOURNAL!!
· BETTY GORDON, 8.19.26
· Dr. Alan MacDonald, Florida pathologist, called me about the above saying, "Betty, you're going to be the FIRST CO-AUTHOR over us 3 medical folks when they gets PUBLISHED in a scientific medical journal !!"· MARNA failed to submit Jack's case for scientific medical publication too!I am extremely disappointed since I paid both people for results. · ON HOLD THERE; designated staff person had major surgery and is recuperating at home until they can come back to work.9.23.26---sometime this summer another person was assigned jack's case since liz horn, bio bank director, was having horrible time working with virginia!!!· DM univ. PRESERVED his brain to study and that has allowed 10 brain autopsies to date to be done!!!!thank you dm univ. former funeral director for preserving it correctly 😉DM NEVER told me he PRESERVED JACK'S BRAIN CORRECTLY or i could have pursued an immediate brain autopsy!!· Betty Gordon, iowa widow/activist· · I was misdiagnosed myself for 35 yrs. by up to 50 drs. I'M 57 YRS. CHRONIC LYME/BART/CAT SCRATCH DISEASE, 2 SPECIES PATIENT !!· THIS IS A WHOLE ANOTHER, PAINFUL STORY TAKING 6.5 YRS. TO GET JUSTICE AND BE PAID 75% OF WHAT I DONATED AFTER JACK’S DIAGNOSIS 3 MONTHS AGO to DURAY RESEARCH FOUNDATION.
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Your story is so important to this cause. I am so sorry you have suffered so much in this medical system. I really think you made a great documentary of what you went through and I look forward to checking out LymeTV and telling patients about this.
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