LYMEPOLICYWONK: Conference Addresses Latest MyLymeData Results
On April 8, LymeDisease.org hosted its first MyLymeData conference in San Ramon, California, to a standing-room-only crowd of over 300. We were delighted with the turn out and honored to have representatives from both the Global Lyme Alliance and the Bay Area Lyme Foundation in attendance. In my speech, I outlined the progress we have made with MyLymeData and shared some of our early results—with a special focus on the effectiveness of alternative medicines that patients have reported on.
I am pleased to provide a video of my presentation for those unable to attend.
In addition to my remarks, Dr. Raphael Stricker spoke about big data, pharma and precision medicine; Dr. Chris Green discussed the microbial stew that may impact patient health in Lyme disease; Dr. Raj Patel talked about mold toxicity; and Dr. Jennifer Sugden addressed pediatric Lyme disease.
Stay tuned for Dr. Stricker’s video, which should be released in the next few weeks.
The only way we are going to increase our understanding of chronic Lyme disease and be able to answer the important questions that directly impact patients’ lives is through big data projects like MyLymeData. It is going to take individual patients coming together and sharing their information to accelerate the research that will figure out this disease. Won’t you be a part of it?
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at email@example.com. On Twitter, follow her @lymepolicywonk. If you have not signed up for our patient centered big data project, MyLymeData, please register now.
- April 21, 2017 at 11:53 pm
- April 22, 2017 at 4:50 am
Thank you for sharing this presentation and for all the work you are doing to help those of us with Lyme.
- April 22, 2017 at 9:24 am
a question I would add, for treatment effectiveness, how long has the “effectiveness” lasted.
if the treatment didn’t help a huge percentage, but provided longer lasting results for those it did help, that may be significant factor in choosing therapies.
also, if relief was temporary, but vastly improved quality of life while on it, that may be another data point for ongoing treatment.
- April 25, 2017 at 1:02 am
Yes, great conference! Thanks, all! Thinking about crf’s comments, there’s a lot that goes into that question, as in how many infections someone has, whether someone detoxes easily or not, level of severity of symptoms, for starters. Then there’s the issue of just what treatments people have done, as in IV, oral, IM shots, straight antibiotics, antibiotics plus complementary care, complementary care only, specifics of the complementary care – it’s complicated.
For example, re complementary care, some swear by their biophoton treatment, some by their Rife treatment, some by their HBOT treatment, etc.
I still think it comes down to what is going to work for each of us, and that is our treatment quest. I am happy anytime I hit a bingo, like taking turmeric works great to reduce my joint and muscle pain, and drinking mangosteen juice stops all my Lyme eye symptoms. Learning about what really helps us can be very helpful to read about, I think.
- May 15, 2017 at 10:19 am
I am also wondering about how effectiveness of treatment should be determined. If it helps you maintain some functioning and reduces symptoms, but you relapse without it, will some people say it is not effective because they are not cured? This is going to be a very large number of people in the chronic lyme community that are not cured, by definition. We would not want the opposition to pretend that if we are not cured by antibiotics, they do not work and should not be prescribed.
Also, the wording on some of the questions in the survey may lead to misrepresentation, unintentional. It was surprising to see the low numbers on some of the neuro misdiagnoses, apart from MS. One can be diagnosed with any of these at any point in the disease, not just at the earliest doctor encounter. Some people will say, for instance, that they have lyme AND Parkinsons or ALS, when late stage lyme takes on that appearance. Some doctor may have told them that, and not realized that lyme did it.
Overall, very good effort in this survey and glad it is being done. Just had a few issues with how the participants might be making results a bit confusing.
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