Lyme Signal: How One Patient Experience Became a Living Library

Your work is important. Thank you for being an advocate.

Hi Luba,

Thank you for sharing your journey. I completely agree with you—no patient should have to search for patterns or piece together their own medical answers.

I also find it deeply troubling, and frankly dangerous, that so many people are relying on online patient support groups for medical advice. At the same time, I recognize how incredibly valuable these communities can be. Many people find information, support, validation, and sometimes even answers that can make a profound difference in their care.

My concern is that these communities are often filled with people who are themselves dealing with serious and complex illnesses, and it can be difficult to distinguish between personal experience and reliable medical guidance. There is something profoundly wrong with a system in which patients feel they have no choice but to turn to one another to find the answers they need.

Unfortunately, I think people will never truly understand the seriousness of this issue until they experience it themselves or watch someone they love go through it.

Such an important story and an incredible idea! I’m so proud of you for turning your lived experience into something that can help so many others. Wishing you the best—I hope people take the time to read your story and vote!

This is amazing. As someone whose family member is debilitated by this disease also. You’re amazing Luba!

What a great example of patient advocacy! Love this Luba! Great job! 👏🏼

hey there Luba your story is incredible and people can definitely use this for help thank you 🙏🏼

As a health care provider, Lyme disease is sadly often overlooked especially since the symptoms can mimic many other diseases leaving patients frustrated and in pain. Having a platform where patients can share experiences I think would help them understand they are not alone and hopefully would also help clinicians better understand the disease process and lead to quicker diagnosis. Thank you Luba for such innovative and inspiring work!!!

What an absolutely wonderful idea. I myself was trying to find more information on Lyme recently and didn’t know where to start, not to mention looking through a ton of scattered sources and information. This would make that process a lot more seamless.

This would be a great resource for both patients and healthcare providers. I hope it comes to fruition!

You have a good story that needs to be told and heard. People will definitely be able to use info for guidance

Hi Luba,

Thank you for sharing your story and taking actions to advocate and find good resources for patients. I totally support your work and compassion for this group of patients.

I'm so glad you are doing this research and sharing it with others for much-needed solutions. I've watched people suffer from Lyme disease for years and would love to see better solutions for it.

Rooting with you and rooting for you.

It’s about time Lyme is looked at thoroughly.

Important work! Appreciate your efforts!

Great work Luba, what a wonderful tool this would be for someone in need of information like this!

Luba, this is a genuinely different and complementary idea to what I'm building — I turn published cost-of-illness research into interactive simulators (document-down), while Lyme Signal surfaces patterns bottom-up from patient-reported experience. I especially appreciate your point that individual anecdotes aren't evidence, but recurring patterns across many patients are a legitimate signal worth investigating — that's very close to how I try to distinguish "observed" from "assumed" in my own tool. One question I'd love your take on: do you see real financial-burden patterns emerging across the stories you've reviewed — specific cost categories, not just symptoms — that federal cost-of-illness data doesn't capture? If so, that's exactly the kind of gap I'd want to make visible rather than silently miss.

Impressive work you are doing here! She is not only beautiful but also has a well developed frontal lobe! 😉

Luba, your story/research is so powerful. It shows how dedicated you are to your research. Thank you for sharing your journey. We all do need more awareness and education within our communities. Especially, being on the reservation, learning Lyme Signal can help so many identify symptoms early. For our providers to treat our patients as well...Thank you for advocating.

The work you put into this is significant. Thank you.

This really resonated with me, especially your willingness to include the uncomfortable parts of your story.

One of the realities of living with Lyme, particularly when you’re sick, scared, and still searching for answers, is that desperation can push people toward things they never imagined they would try. I appreciate that you didn’t hide that part, but you also didn’t present your personal experience as proof or encourage anyone else to follow the same path. That distinction is incredibly important.

But the bigger idea here is what really grabbed me: what could we learn if we stopped looking at every patient story in isolation?

So much knowledge exists inside this community, but it is scattered across forums, Facebook groups, Reddit threads, conversations, case reports, and individual experiences. No single patient story proves very much on its own, but thousands of properly organized stories can reveal patterns, generate better questions, and point researchers toward things worth studying formally.

That is what I really like about LymeSignal. It takes something Lyme patients have been doing out of necessity for years, learning from one another, and asks how we can turn that enormous collective experience into something more organized, useful, and scientifically valuable.

We may not individually have all the answers, but collectively we probably have a hell of a lot more information than we realize.

Really thoughtful concept and a great submission.

What an incredible story! Your work is important and am definitely sure a lot of people will get help reading this. Thank you!

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.

As an integrative practitioner, I really appreciate the vision behind this. So much can be learned when we look beyond individual experiences and begin identifying patterns across larger groups of patients- especially with complex conditions where there may be many contributing factors and people often spend years searching for answers. Patient experiences can provide incredibly valuable clues about what deserves further investigation. I love the idea of creating a bridge between those lived experiences and the questions researchers and clinicians choose to explore. 💗

This is an outstanding idea. How did you come up with this?

Thank you for sharing your story and for recognizing the value of patient experiences as a source of insight and discovery. I love the concept of organizing collective lived experiences to help identify patterns, support patients, and inform research. It feels very aligned with the broader goal of turning real-world patient data into actionable knowledge. I'm also curious whether Lyme Signal is collaborating with researchers or groups like Cure ID, as there seems to be strong potential for synergy between these efforts.

Luba, thank you! As a Naturopathic Doctor and patient myself, I want to use this! What a fantastic idea to create a living library and generate valuable knowledge based on real patient experience. I love that you listed Japenese Knotweed as your example. Thank you for all your efforts and for bringing more hope to those patients struggling to navigate this all on their own, or with the help of a practitioner. I look forward to using this tool in my practice and to improve evidence for clinical therapeutic benefit of the various natural and pharmaceutical treatment options.

Than you for sharing your story!

This is awesome work and I know how much Lyme has affected people I’m close too. Very informative