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

 

				Click here to support Alzheimer's- Borrelia Infections b... Alzheimer's Disease Studied with Autopsy demonstrates  that Infection by Borrelia Spirochetes is regularly present in Autopsy Alzheimer's Disease brains. The Chroni...
				View on www.gofundme.com	Preview by Yahoo

 

Alzheimers might be infectious

  Is Alzheimer's Disease Transmissible?

				Is Alzheimer's Disease Transmissible? 'Proteopathic seeds' might cause rare cases of acquired disease
				View on www.medpagetoday.com	Preview by Yahoo

High prevalence of Lyme disease ticks in Pennsylvania

This study is particularly interesting to me because I grew up in Pennsylvania and was first plagued by some unknown but terribly debilitating disease during my late teens while living in suburban Philadelphia. Our house was surrounded by forest, dear, squirrels, mice, etc. I worked in and played in the woods of Pennsylvania and New Jersey during my childhood and teen years. As it turns out, Eastern Pennsylvania is one of the most Lyme-endemic areas in the United States. Our location as I was growing up turned out to be a pitta me of lime territory. That is, suburban residential developments bumping right up against thick woodlands. This was the case also in and continues to be the case in Westchester County (just north of New York City), and  Lyme Connecticut, for which the disease is named. It was only during my initial intake at the age of 52, by a well-known Lyme literate medical doctor here in the SF Bay Area, that I was describing almost a text book case. For almost no reason at the age of 17, while holding summer jobs out of doors and typically in the woods, I came down with intense anxiety attacks, depression, insomnia, head pressure, neck pressure, loss of appetite, personality changes, inability to concentrate and various phobias. Working summer jobs as a surveyor's apprentice and as a crew member for a tree surgeon, the description of the sudden onset of my problems was all my LLMD had to hear. Combining my positive serology Lyme test results that we had just received with my history convinced him that I had probably been carrying the pathogens for a good 30 years or more. I had already suffered through two two-year bouts of active Lyme disease which I had attributed to going through difficult life changes. Looking back, I realize that they were classic Lyme disease flareups and more indicative of something being wrong with my body than with my psychology.

-Bob 

Prevalence Rates of Borrelia burgdorferi (Spirochaetales: Spirochaetaceae), Anaplasma phagocytophilum(Rickettsiales: Anaplasmataceae), and Babesia microti(Piroplasmida: Babesiidae) in Host-Seeking Ixodes scapularis(Acari: Ixodidae) from Pennsylvania

 

M. L. Hutchinson, M. D. Strohecker, T. W. Simmons, A. D. Kyle, M. W. Helwig

DOI: http://dx.doi.org/10.1093/jme/tjv037 693-698 First published online: 9 April 2015

Abstract

The etiological agents responsible for Lyme disease (Borrelia burgdorferi), human granulocytic anaplasmosis (Anaplasma phagocytophilum), and babesiosis (Babesia microti) are primarily transmitted by the blacklegged tick, Ixodes scapularis Say. Despite Pennsylvania having in recent years reported the highest number of Lyme disease cases in the United States, relatively little is known regarding the geographic distribution of the vector and its pathogens in the state. Previous attempts at climate-based predictive modeling of I. scapularis occurrence have not coincided with the high human incidence rates in parts of the state. To elucidate the distribution and pathogen infection rates of I. scapularis, we collected and tested 1,855 adult ticks statewide from 2012 to 2014. The presence of I. scapularis and B. burgdorferi was confirmed from all 67 Pennsylvania counties. Analyses were performed on 1,363 ticks collected in the fall of 2013 to avoid temporal bias across years. Infection rates were highest for B. burgdorferi (47.4%), followed by Ba. microti (3.5%) and A. phagocytophilum (3.3%). Coinfections included B. burgdorferi + Ba. microti (2.0%), B. burgdorferi + A. phagocytophilum (1.5%) and one tick positive for A. phagocytophilum + Ba. microti. Infection rates for B. burgdorferi were lower in the western region of the state. Our findings substantiate that Lyme disease risk is high throughout Pennsylvania.

See the whole article:

http://jme.oxfordjournals.org/content/52/4/693

• Ixodes scapularis
• Borrelia burgdorferi
• Anaplasma phagocytophilum
• Babesia microti
• Lyme disease

• © The Authors 2015. Published by Oxford University Press on behalf of Entomological Society of America. All rights reserved. For Permissions, please email: journals.permissions@oup.com

Alan MacDonald continues work on hypothesis that Lyme underlies Alzheikmer'

(I reformatted the text in legendary Lyme researcher Dr MacDonald's email from Aug 27 so that it is easier to read. I decreased the font size and removed many hard carriage returns. I hope I didn't make any errors by losing some text or making mistakes in assuming groups of sentences that go together.)

Dear Peter,

You should be aware of my Recent posting of Image data on the F1000 research Website. PDF attachment below.

I am aware of Dr. Miklossy's very important Research which dates from year 1993.

My Three papers: all from the decade of the 1980's...

1.)  1986- JAMA- Borrelia in the Brains of Patients dying with Dementia demonstrated:

        1. Pure cultures of Borrelia burgdorferi from two patients - Confirmed with immunoreactivity + for H5332 ( OSP A- burgdorferi)  H9724 ( Flagellin antibody for both burgdorferi group For Borrelia miyamotoi group and for Relapsing Fever group.

 

2.)  My paper in 1987 in Human Pathology , "Concurrent Neocortical Borreliosis and Alzheimer's Disease"

        Case report -1 patient- Alzheimer's confirmed by strict neuropath outside consultation { Armed Forces Institute of Pathology [AFIP]}. This case was Positive by brain culture for pure growth of Borrelia Burgd.  Imprint cytology and tissue sections were positive for Borrelia. burgd with Monoclonal Antibody H5332

3.)  Year 1988- " Concurrent Neocortical Borreliosis - a case demonstrating a Cystic Spirochetal form"

       {First report in the world of a Borrelia Cystic Form.} Cystic form was positive for Monoclonal Antibody H5332. Cystic borrelia was embedded inside of an Alzheimer Plaque in autopsy Brain.

I take the time to recall historical chronologies in the Discoveries linking deep Brain Chronic Borrelia infection Proven by Positive Borrelia pure cultures of Autopsy Brains performed by me prior to year 1988.

Dr. Miklossy's very important works are extremely important, and her research now favors Oral Spirochetes as a more common cause of Alzheimer's neurospirochetosis. Oral spirochetes are much more fastidious, and nearly impossible to grow from Tissues with Chronic Treponemal infections,

I continue my research on Borreliastrain causes of Alzheimer's neurospirochetosis.  (Most recently adding 6 cases of Doubleinfection ( Burgdorferi + Miyamotoi) in Autopsy Alzheimer's brain tissues.

Oral spirochetes may include several species of Treponeme family of spirochetes. These species are more difficult to culture in the laboratory, and do not at present have the Monoclonal antibody reagents to bind to them, as do Burgdorferi Borrelia.

I am now relying on DNA Probes to bind to the DNA of Spirochetal pathogens. This is because, the imaging of Borreliawith FISH hybridization, does not rely on Antibody binding to the borreliaspirochetes- [ especially important today because there are no commercially available Miyamotoi borreliaantibodies for sale.}

I hope that you derive some useful information from my input. Please see the attachment below. The F1000 website will have additional information provided by me in 3 days. A doi number will appear with the F1000 final posting of my Poster. I will follow up with a formal manuscript providing much more detail about the Research Protocol.

All good Wishes to you,

Alan