Lorraine Johnson speaks at Stanford MedX about Lyme disease and 'big-data' research

Lorraine Johnson, JD, MBA

Even though there are over 100,000 cases of CHRONIC Lyme each year-three
times more than hepatitis C - only three government treatment trials have
ever been conducted. And those three trials didn't look at treatments
actually used by physicians treating chronic Lyme disease, but were instead
limited to 90 days of a single form of antibiotics. And, they didn't study
ordinary patients. One screened over 32,000 patients to finally enroll just
23, who met the researchers' highly specific criteria. Patients in these
treatment trials are by definition not typical.

The last government treatment trial was over 15 years ago and it took four
years to recruit, five to complete, seven to publish.  It cost nearly $5
million dollars. And there's currently no research-not a single treatment
study on chronic Lyme disease treatment- in the pipeline.

Patients with chronic Lyme disease can't afford to wait for tomorrow's
research -which may never come. They have a worse quality of life than
patients with multiple sclerosis; 43% can't work and 20% are on disability.

See the rest of the article here:
https://www.lymedisease.org/lymepolicywonk-my-speech-at-medx-on-lyme-disease

John Caudwell: Phones 4u founder calls on Government to research Lyme disease

Inspiring news for Lyme patients in the UK!! Perhaps we have finally found our Michael J Fox of Lyme Disease? It's a shame that symptoms have to become so horrible for so many people before changes are set in motion. Mr Cauldwell sounds truly compassionate and dedicated to changing things in the UK when it comes to denial of treatment for chronic Lyme.

 

-Bob

John Caudwell, the billionaire founder of Phones 4u has called on the Government to join him in researching Lyme disease, claiming the illness is massively underdiagnosed and could be affecting many tens of thousands of people in the UK.

Mr Caudwell's plea came a week after he revealed that he and four other members of his family had contracted the illness, which is widely believed to be caught by being bitten by a tiny tick carrying the Borrelia burgdorferi bacterium.

Mr Caudwell also revealed today that his son Rufus, 20, who has suffered years of mental health problems because of the disease, is now so severely ill that he has within the last three days started suffering episodes of psychosis and was "fighting for his life".

See the video and the rest of the article:

http://www.independent.co.uk/news/people/john-caudwell-phones-4u-founder-calls-on-government-to-research-lyme-disease-a6672826.html

Here is a video interview with him:

https://www.youtube.com/watch?v=Y24QL-H5ZLU

Patient's suicide renews concerns about Kaiser mental health services

This story about a woman who jumped off of the roof at a Kaiser hospital. It's a little off topic, but I've met more than a few Lyme patients who are left feeling their Kaiser HMO leaves them feeling invalidated, untreated, depressed and anxious so I'm reposting. Kaiser does not acknowledge the existence of chronic Lyme disease and will not treat for it using long-term antibiotics. 

http://www.latimes.com/business/la-fi-kaiser-mental-health-20150926-story.html

New Antibiotic from Soil Bacteria

Many of the most widely used antibiotics have come out of the dirt. Penicillin came from Penicillium, a fungus found in soil, and vancomycin came from a bacterium found in dirt. Now, researchers from Northeastern University and NovoBiotic Pharmaceuticals and their colleagues have identified a new Gram-positive bacteria-targeting antibiotic from a soil sample collected in Maine that can kill species including methicillin-resistant Staphylococcus aureus (MRSA) and Mycobacterium tuberculosis. Moreover, the researchers have not yet found any bacteria that are resistant to the antibiotic, called teixobactin. Their results are published today (January 7) in Nature.

"When we saw no resistance [to the compound], my first reaction was that we had discovered junk that would be highly toxic," said microbiologist Kim Lewis, director of Northeastern's Antimicrobial Discovery Center. But mice treated with teixobactin after lethal doses of either MRSA or Streptococcus pneumonia survived and showed no signs of toxicity—a pleasant surprise to Lewis and his colleagues.

http://www.the-scientist.com/?articles.view/articleNo/41850/title/New-Antibiotic-from-Soil-Bacteria/

Pathologist Alan MacDonald's latest Alzheimer's discovery

Dr Alan MacDonald details and explains his cumulative data of staining 100 consecutive Alzheimer Plaques with species specific fluorescent  FISH stains. It becomes clear that early on we limited our thinking to just one species Borrelia burgdorferi, but Alan's work shows that Borrelia miyamotoi is a big player in neurological disease and associated with Alzheimer plaques. How many more species are waiting for us? 

"This work is so fundamental and elegant that, to me, it is like seeing the DNA Helix for the first time."  

Link:
00000 00000 Living Plaques in Alzheimer's Disease -contain Living Borrelia Biofilm .pdf
 
 
 
 

 

Lorraine Johnson Stanford MedX Speech--Big Data and Lyme disease

Next week, Lorraine Johnson will be honored to speak at the Stanford MedX conference on Patient Powered Research and Big Data. The Stanford MedX conference is the largest conference on healthcare policy and innovation. You can watch it streaming live if you tune in at  around 10:30 am PST on Saturday Sept 26th. Patient powered research and big data are very important for patients with Lyme disease. She will focus on Lyme disease and the potential for patient powered research using big data to be a game changer. 

Here is the link to her blog: https://www.lymedisease.org/lymepolicywonk-my-speech-at-stanford-medx/

 

Chronic Lyme explained at last!

Audio: Intense story of Lyme and Bee Venom!

Classic story about Lyme disease being misdiagnosed, and fifteen years of trying to get better. Then suicidal thoughts and plans. Then nature intervened in an amazing and unpredictable way. I don't want to give away the plot. It's only 12 minutes long, and worth the listen

-Bob

https://soundcloud.com/snapjudgment/venom-snap-judgment-unspoken

Another article about Alzheimer's possibly being infectious

The "seeds" of Alzheimer's disease may be transmitted from one person to another during certain medical procedures, scientists have found.

A study into people who died of a separate kind of brain disease after receiving injections of human growth hormone suggests that Alzheimer's may also be a transmissible disease.

http://www.independent.co.uk/life-style/health-and-families/health-news/alzheimers-disease-may-be-infectious-study-suggests-10493032.html

Lyme and Alzheimer's connection? Kick in a few bucks?

I rarely, if ever, post something that is about donating cash to good causes, etc. However, this is an exception. I've been following the research work of Alan MacDonald for a few years now, and if you saw Under Our Skin (the award-winning documentary about Lyme disease), you'll have seen Alan talk about his discoveries as a pathologist. His work on the topic of persisters (Lyme bacteria that can survive even strong antibiotics and keep people sick) is important work. He has also shown what suggests a connection between Lyme and Alzheimer's disease. Alan works independently in his own laboratory. He's trying to raise $20 to help pay the bills and continue the research. As of today (9-11-15) donors are in for almost $13k.  Click the link below to read more about Dr MacDonald's work, and perhaps give a few bucks to this worthy cause. 

=Bob

 

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