We just had a huge Lyme patient conference in N CA on Saturday. A big take-away message is that they want to increase the number of patients posting data in their survey from 7,300 now to 10,000.
It really helps in presenting data to be able to say x percentage of Lyme patients have this history, go through the following, do the following, etc.
This is the largest compilation of Lyme patient data that's ever been done. It beats the low numbers that were enrolled in trials, it beats the cost and it's current. This number of patients enrolled in the survey is now in the top 10 of all patient registries.
They said they will post an edited form of the conference on their site in a few weeks. Lorraine Johnson, CEO of LDo, presented data from MLD, then 4 Lyme doctors presented.
A couple notes from Lorraine's talk: spending magnitude for infectious diseases goes in this order (highest to lowest):
HIV. flu vaccine, hep C, lower respiratory tract infections, Hep B, malaria, skin and soft tissue infections, STDs (not HIV), diarrhea, TB, leprosy, endocarditis, ottis externa, LYME, BK virus.
Quality of life - 72% rated fair/poor, compared to general population, 16%
Functional impairment - most stopped working, changed the number of work hours, changed the nature of work
10 top concerns: dx, tx, delayed dx, natural therapies, Parkinsons/ALS connection, rehab, why some get sick and others don't, reactions to treatments, co-infections, tailored tx based on sx
Annual Lyme infections - 6x faster than HIV, 30x faster than TB. And those are just the reported Lyme infections.
Posted by etb6855 (Member # 48383) on :
Thanks Robin, 4am here and still no sleep *ugh. In my insomnia cycle.
Was there any information presented on new treatment or financial assistance with treatments since insurance does not cover our MD visits, supplements and continued rounds of antibiotics?
#need help
Posted by Robin123 (Member # 9197) on :
Hi et - unfortunately, no discussion of funding - the organization funds research and doctor training, not patients' care.
They discussed care, but most of it was not new.
Yes, I know it's expensive. If anyone is under age 26, the Lymelight Foundation gives grants up to 10K and they are involved in wonderful fundraisers around the year in order to do so. It really takes wealthy people with know-how and community to raise the funds.
There are threads on here with low-cost tips, if someone could bring them up.
Posted by jblral (Member # 8836) on :
You can watch the first video from the MyLymeData conference. Others will be posted soon.