MyLymeData2017, Lorraine Johnson's presentation

Lorraine Johnson, CEO of LymeDisease.org, presents results from MyLymeData in San Ramon, CA, on April 8, 2017. MyLymeData uses big data research tools which allow patients to quickly and privately pool their data to determine which treatments work best. For more information, go to www.LymeDisease.org.

[@wkjeom]

Love you Lorraine. Don't know how you do it all, but kudos, kudos, kudos. Same goes to Dorothy L. too. How can we thank you and those who work with you enough.

[@madisutton3695]

You are smart and amazing! THANK YOU VERY MUCH for your contributions Lorraine Johnson!

[@MizAprilDawn]

Thank you Lorraine Johnson for everything that you do for those of us that are sick at home. I feel like the forgotten and overlooked patient, but after joining MyLymeData, I can see I have a voice again. So thank you to all of the people at Lymedisease.org, who work so hard for those of us that are sick!

[@larryherko4800]

Thank You, as a 3.5 year Lyme patient, and a contributor to mylymedata, I really enjoyed this presentation.

[@gilfromnaperville3645]

Many people owe an awful lot to leaders like Lorraine Johnson. Thank you and all of those others who are working to deal with this huge problem.

[@Cronos-ms3pw]

data on effectiveness of antibiotics opposed to the alternative treatments would be very interesting as well

[@MizAprilDawn]

As a 23 year Lyme patient, I have only once ever been asked or pestered for money. And that was from a fibromyalgia organization. I have never paid a dime to any Lyme organizations. So interesting to here someone say that lymedisease.org is just out for money.

[@wkjeom]

THERESA EISEMANN -- So very extremely true.

[@tallen6330]

Most Lyme (and co-infection) survivors have little money because it's all going to healthcare. I've never been asked for money from a Lyme group either.

[@kend3800]

Great organization. I tried to enroll but couldn't as I'm not an Am. citizen. Would be interested to know what comprises the herbal protocol.

[@lelamoore7178]

why is no one talking about the blood supply?

[@pureone26]

In Australia Lyme etc is a national disgrace. Doctors say it does not exist (even if you got it overseas and had the bullseye rash), so no diagnosis, no treatment. In fact you get bullied and persecuted if you raise it (and told you are mad). Many people, including children, are suffering and dying every day. Even the rare doctor that might try to help a patient can lose their license.

[@alfonindatube]

A fair question would be, what protections do you have in place to protect your data from actors with conflict of interests?

[@TheLymeTimes]

Alfonso, we have a lot of privacy protections in place. You can read details on our FAQ page here: www.lymedisease.org/mylymedata/faqs/

[@wkjeom]

Alfonso Perez -- I am sure there are actors. But anyone who wants to act out this disease must truly be crazy. Our symptoms are so weird, someone who does not have this disease would really have a difficult time thinking up fake symptoms. I mean Lyme suffering is horrific, and and its effects are truly unimaginable. I can't imagine why anyone would want to fake what we go through.