National Science Foundation awards $800K to researchers using MyLymeData
The National Science Foundation (NSF) has awarded a three-year, $800,000 grant to explore predictive analytic techniques using data collected by the MyLymeData patient registry.
Researchers at the University of California Los Angeles (UCLA) and Claremont McKenna College will collaborate with LymeDisease.org on the big data project.
Lyme disease, a bacterial infection transmitted by the bite of a tick, can be difficult to diagnose and treat. Many patients diagnosed with Lyme disease remain ill after treatment, while others improve. Precision medicine uses predictive analytic tools and artificial intelligence to identify and target treatment approaches to those patients most likely to respond.
LymeDisease.org, a national patient advocacy organization, launched MyLymeData in 2015. The project has enrolled over 9,000 patients since then, putting it in the top 5% of patient-led registries in the nation.
FasterCures, a non-profit organization that promotes innovation in medical research, recently surveyed patient-led registries. Out of over 110, only two had enlisted more than 10,000 people. MyLymeData is on the brink of 10,000 patients enrolled.
More than one million data points have been collected, related to the nature and severity of symptoms, how long it has taken patients to be diagnosed and what treatments have been most effective. According to Lorraine Johnson, CEO of LymeDisease.org and Principal Investigator of MyLymeData, the registry expects to be the largest study of Lyme disease ever conducted.
“Big data research is key to advancements in Lyme disease,” said Johnson. “The largest government-funded study of chronic Lyme patients enrolled just 129 patients. Our goal is not only to gather data to help find a cure, but also to help recruit patients for clinical trials.”
The research effort will be led by Drs. Deanna Needell (Professor of Mathematics at UCLA) and Blake Hunter (Assistant Professor, Claremont McKenna College). The team has extensive experience with big data synthesis, analytics, and deep learning approaches.
“The NSF grant will allow us to develop cutting-edge mathematical tools,” said Dr. Needell. “Validation of these tools requires a large real-world database, and MyLymeData fits the bill perfectly.”
Patient registries play a vital role in the progress of data-driven science. “MyLymeData is part of an essential shift in research recognizing the importance of precision science, precision diagnostics and precision medicine,” said Dr. Raphael Stricker, a San Francisco internist and co-principal investigator on MyLymeData. “Without advancements in these areas, the research environment in Lyme disease will stagnate.”
MyLymeData is open to patients diagnosed with Lyme disease who reside in the United States. Additional information can be found on the LymeDisease.org website. Johnson will present preliminary results from MyLymeData later this week at the annual Columbia University/Lyme Disease Association meeting in Philadelphia.
About MyLymeData: MyLymeData is a longitudinal study that tracks patients’ progress over time. It is an ongoing process where patients contribute their experiences so that trends are defined. Patients at all stages of the illness, as well as those who have recovered, are encouraged to join. Family members of deceased patients can report information on their loved ones’ behalf.
About LymeDisease.org: Since 1989, LymeDisease.org has advocated nationally for quality accessible healthcare for patients with Lyme and other tick-borne diseases. We are committed to shaping healthcare policy through science-based advocacy.
About the National Science Foundation: Created by the U.S. Congress in 1950, the NSF promotes the progress of science, advances national health, prosperity, and welfare, and works to secure our national defense.
I am very appreciative of all the Lyme studies by esteemed universities and other medical organizations. However, I’ve been literally in bed for almost 4 years because of Chronic Lyme. I explore all sites, blogs, webcasts, webinars, etc. related to Lyme and have yet to see anything substantial about how to help Chronic Lyme patients. I have undergone so many different treatments, including spending a month at a Lyme clinic in a foreign country. Nothing has helped and now I cannot walk (with a walker) more than 10 feet. Yes, I know that Lyme has created many other problems (heart murmur, drop foot, brain fog, etc.), the worst being neurological issues. But unless I address the underlying LYME (I still test positive), nothing will follow correctly, much like a game of Dominoes. And yes, I’ve gone through 37 different doctors, so I’ve been persistent. So my plea is for research and cure for Chronic Lyme. Any updates?
Did you try Buhner herbs?
Maybe its my diet, or -as low as possible stress level – lifestyle, but I’m also taking quite a lot of Buhner herbs. Most of my symptoms are going away. And I had quite a serious neuro problems.
And yes this is f****d up that the research on LD is suffering from such low financing and Government and Media attention.
When you compare with amount of money that was throw on research on AIDS its like a drop in an ocean.
Anyway – stay strong my friend, boost your immune system. No alcohol, no tobacco, extremely low sugar diet. results are coming slowly but they are coming.
God Bless!
for some borreliosis patients the biggest problem is relapse.
that is a difficult problem to address in statistical analysis of “successful” therapies.
DID you treat the PARASITES also 1st eliminating them and other things before lyme/co-infections?
my heart goes out to you; best wishes & DON’T GIVE UP EVER!
betty gordon
48 yrs. chronic lyme
35 yrs. MISDIAGNOSED by 40-50 drs. UNACCEPTABLE!
Thank you for collecting data!! This is what has helped me and my family with lyme, so would be great data to help those struggling.
I would say to try Buhners Herbs. I just got diagnosed and my dna says I have had this disease a long time and possibly born with it. So for 50 years and has progressed and the Buhners herbs helped a great deal. After 1.5 years of self treatment I felt a lot better, but was having reactions to the herbs so now I am on other plant based help which is; A-Bart and Artisisimin and they are also helping a great deal. The biofilm seems to make the regular pharmaceutical drugs not as helpful as the biofilm is keeping them away from eradicating the Lyme and coinfections. The plant based items seem to be able to permeate the cells and bacteria so they keep the disease at bay. I think it may be life long, I am not sure at this point, but it is certainly better than being sick. Feeling ok and somewhat good as opposed to chronically ill. My immune system is pretty strong, but with all my infections it is starting to cause other issues in my body like adrenal fatigue, low progesterone and sugar levels starting to climb and thyroid going out. I am hoping the herbal treatment will help my immune systems so everything doesn’t start to go downhill.
Try herbals and skip the antibiotics and see if you fair better. I have heard that psyllium or charcoal can help absorb the toxins that are being killed off by herbs to this can be helpful as well.
How does your DNA know how long you’ve had it. Or I guess my real question is how do you have that tested? I think I was born with it but would love to definitively know.
Charcoal is great for short term detox, but long term it begins to drain the good things with it…or so I am told. I too have had Lyme for a very long time, but recently with stress levels way too high( and reinfection with tic bite with EM rash, not treated with enough medication …2 pills from the ER!!) I was laid low and had to get in line to see a Lyme literate doctor. It took 3 months waiting list here in mid coast Maine) Thus the journey begans. I type this from my bed, I hate so being here, but… Addressing one’s immune system with support, good diet ( you guy are right on) supplements such as mentholated B vits, anti oxidants, well you all know the drill should; not be over looked. Anyone have any thoughts about Byron White’s formulas?? I know Igenex labs in Calif is working with the CDC ( believe it, working with CDC?) coming up with a new test for chronic lyme, and that should have happened by now, certainly very very soon. Also, any Doc that throws you out the door with a couple weeks of Doxy/ taken with food or milk ( Milk, diminishes effectiveness) should be shot!!
Once chronic, we are on our own and site such as this a very helpful tool to gather ideas about overcoming the disability that comes with being a victim of this vicious disease. Anyone with children has my deepest sympathy, neighbor has an 11 year old taken from school…brain fog has claimed another youth. I am 72, not exactly on my death bed, but at times it feel like it…and thus not ready to give up
Questions:
Artemisia (sp/?) ( any thoughts on dose?)
anyone use garlic ( not in mixed company)
and what does anyone use for “biofilm busters”
if antibiotics are needed, what has anyone tried (combos)
thanks, Susan
I am a month short of being 65, end March 2015 my Chronic Lymes ( which I knew nothing about) attacked my brain stem, I woke up one morning with nursing staff telling me what a bad seizure I had..all I knew was I couldn’t drink,eat, talk,sit up much less walk ….I as sent ro a local nursing home, with stroke symptoms and the whole medical system saying I had a seizure and the nursing home saying I had a stroke..I came home July 2015 walking with a walker and having to use wheel chair outside in case of falling since night I was home,total incontinence , after 16 mo. my neurologist ordered 2 different two different test one with electrodes and with in a week another where he inserted needles into muscles….a week later I was called back and told that all muscle and nerve damage were permanent , stopped my P.T. and he was leaving for another hospital in less than a month.. I found a D.O. 1 1/2 hrs away that knew more about Lymes than all the Doctors at OMC… my chart reads I had mennigitis / swelling of the brain stem…I have seen a urologist with no good report..do Kegals.. I have done enough of those to be a virgin again….. so coming up on 3 yrs. I can’t tell you tell you how many time I have fell the only time in my life I’m happy to be over weight or would have broken something..I had no rash ,bulls eye, or tick that I remember. When I started this trip they laughed at Lymes, now the local TV stations said something about a month ago about Lymes… I sure as h_ll haven’t lived this 3 year on to be told I will only get worse and if my brain doesn’t kill me my heart will… Waiting to see another neurologist in November….