Saturday, December 17, 2016

Cures Act passes!

The Lyme bill (Cures Act) passed through the House (344-77 vote), passed thru the Senate (94-5 vote), and on 12/13/16 the bill was signed by President Obama.  

To keep up with Lyme related legislation you can visit:



or this Lyme Legislation website:

Friday, December 9, 2016

Lyme Vaccine trials to begin

Valneva Receives FDA and European Approvals to Start Clinical Testing of Lyme Disease Vaccine Candidate

Lyon (France), December 9, 2016 - Valneva SE ("Valneva" or "the Company"), a fully integrated, commercial stage biotech company focused on developing innovative life-saving vaccines, today announced that its vaccine candidate VLA15 against Lyme disease is now progressing into clinical testing (Phase I) following the Investigational New Drug application (IND) clearance from the Food & Drug Administration (FDA) and the approval of the Clinical Trial Application (CTA) in Europe (Belgium).

Currently, there is no licensed vaccine available to protect humans against Lyme disease, a multi systemic tick-transmitted infection that can cause serious health problems and disabilities. Each year, an estimated 300,000 Americans and 85,000 Europeans develop Lyme disease and according to the CDC (Centers for Disease Control and Prevention), it is the fastest growing vector-borne infectious disease in the United States.

Read the rest of the story:

Tuesday, December 6, 2016

How much does Lyme disease cost the United States?

Clin Ther. 1998 Sep-Oct;20(5):993-1008; discussion 992.

A cost-of-illness study of Lyme disease in the United States.

Maes E1Lecomte PRay N.

Author information

Erratum in

Clin Ther 1999 Feb;21(2):430.


Lyme disease produces a diverse clinical picture that can include serious and potentially debilitating cardiac, neurologic, joint, and skin involvement. It is characterized in three stages--early localized (stage I), early disseminated (stage II), and late disseminated (stage III)--and medical management is highly dependent on the stage at which the patient presents and the physician's awareness of available treatment options. This study was conducted to establish the medical and economic burden of Lyme disease in the overall US population, which included determining its endemicity in high-risk states and counties, describing current treatment patterns, measuring direct and indirect costs, and defining the cost burden by age group (<18 years and > or =18 years of age). Medical, epidemiologic, and economic data were collected, and an algorithm was developed representing the natural course of Lyme disease and the progress of health states over time following medical intervention. Using an annual mean incidence of 4.73 cases of Lyme disease per 100,000 population in the decision analysis model yielded an expected national expenditure of $2.5 billion (1996 dollars) over 5 years for therapeutic interventions to prevent 55,626 cases of Lyme disease sequelae. This estimate included both direct medical and indirect costs. However, there is evidence of considerable variation in incidence within states. Our findings support development of vaccination strategies for specific target groups.


I found some additional data from the study…these costs were based on 1996 values

The treatment costs for early disseminated disease accounted for 36% of the total direct costs and 64% spent of antibiotic treatments as well as treatment of side effects.


With the costs of late disseminated disease, the values were reversed, 

roughly 2/3rds spent on treatment of the manifestations.


Early disseminated disease cost from: 

$731/per patient/per year for arthritis to 

$3,445/patient/year for cardiac sequelae


Costs for late disseminated:

Musculoskeletal complications $2740/patient/year and 

cardiac complications came to $8270/patient/year 

Saturday, October 15, 2016

Probiotics- Brands Recommended?

Here's part of a thread among doctors about their use of probiotics. Favorite brands, etc. Read from bottom up. 


The Bacillus Subtilis Story:




"For many years afterwards, cultures of Bacillus subtilis were sold worldwide as a medicinal product (sold in the U.S. and Mexico, for example, under the brand name Bacti-Subtil) rapidly becoming the world's leading treatment for dysentery and other intestinal problems. Unfortunately for Americans, this popular bacterial supplement that cures intestinal infections began losing favor in the late 1950's and 1960's, upon the advent of synthetic antibiotics which were heavily touted by the giant pharmaceutical companies as "wonder drugs," even though they cost five times as much as Bacti-Subtil, and took three times longer to accomplish the same results."


Read more:


Probiotic containing Bacillus subtilis: Bio-Identical SBO Probiotics Cosortia



Sent: Thursday, October 13, 2016 1:20:08 AM
Subject: Probiotics- Brands Recommended?

Thought a good conversation on probiotics would be helpful since there are so many on the market today and so many opinions about them.  Do you have a preference and why or why not?

Thursday, October 6, 2016

Drug to Stop Neuroinflammation

A question remains about whether the root cause of the inflammation (bacteria, virus, other?) remains. But at least researchers are looking at inflammation as part of neurodegeneration.

Wednesday, October 5, 2016

Taipei, Oct. 4 (CNA) A woman has been infected with Lyme disease

Woman confirmed to be infected with Lyme disease

Taipei, Oct. 4 (CNA) A woman has been infected with Lyme disease after getting bitten by a tick in the United States, the Centers for Disease Control reported Tuesday.

The CDC said that the patient is a 60-year-Taiwanese woman who lives in Massachusetts with her family.

She developed numbness on the right side of her face and rashes on her limbs Sept. 11 and sought medical treatment in the U.S. She returned to Taiwan Sept. 14 and sought medical treatment Sept. 19 after her symptoms did not improve.

The CDC said that during the Lyme disease incubation period (Aug. 11-Sept. 8), the woman had contact with wild deer, which are the tick's normal host.

Taiwan has had two confirmed Lyme disease cases so far this year, both imported, one from Sweden and the most recent one from the U.S.

The CDC said that there have been 12 confirmed Lyme cases in Taiwan since 2007, all imported.

Lyme disease is an infectious disease caused by bacteria of the Borrelia type. The most common sign of infection is an expanding area of redness, known as erythema migrans, that begins at the site of a tick bite about a week after it has occurred.

The rash is typically neither itchy nor painful. Approximately between 25 and 30 percent of infected people do not develop a rash.

Other early symptoms may include fever, headache and fatigue. If left untreated, symptoms can include loss of the ability to move one or both sides of the face, joint pain, severe headaches with neck stiffness, and heart palpitations, among others. Months to years later, repeat episodes of joint pain and swelling may occur. 

(By Chen Wei-ting and Lilian Wu)

Thursday, September 22, 2016

Lyme disease is subject of new documentary.

Lyme disease is subject of new documentary at New Jersey Film Festival 

Monday, August 29, 2016

Low-Dose Naltrexone for Lyme treatment

I have mentioned this before in my blog, but saw an email with some links in it today so thought it's high time for me to re-post something here about it. 

Naltrexone, a cancer drug, is used in low doses for treating inflammation.

This one from Dr. Mercola:

Low-Dose Naltrexone (LDN): One of the RARE Drugs that Actually Helps Your Body to Heal Itself

This from the Clinical Rheumatology (2014)

The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain

And this site apparently run by David Gluck, MD of NYC.

Thursday, August 25, 2016

Nematodes and spirochetes in brains of cadavers

This is the work of Alan MacDonald and Tom Grier related to findings of nematodes and spirochetes in brains of cadavers.

Tuesday, August 23, 2016

Letter by Dorothy Leland rebuttal to Daily Republic news article on Lyme

Dorothy wrote an excellent article, and I'm very glad she refuted Scott Anderson. I tried multiple times to post a comment, but the link does not respond.

— Virginia

Check it out!

Write a response!

You probably didn't see the article that inspired her to write it. Its title is 

Long-term antibiotics not helpful in treating Lyme disease
One of the things the author states is a common myth, since research says up to half the patients continue to have chronic symptoms, not "a minority."

He wrote: "There is a minority of patients, however, who are diagnosed with chronic Lyme disease," 

Daily Republic published it in June and it had only 2 comments.

It was good of them to give Dorothy this opportunity.

Now go and comment so the paper knows we care.

Phyllis Mervine,   CaliforniaLyme

Friday, August 19, 2016

Stevia Kills Lyme Disease Pathogen Better Than Antibiotics (Preclinical Study) | GreenMedInfo | Blog Entry

Posted on:

Lyme disease is exceedingly difficult to treat, due to its well-known shape-shifting (pleomorphic) abilities, with conventional antibiotics often failing to produce a long-term cure. Could the commonly used natural plant Stevia provide a safer, and more effective means to combat this increasingly prevalent infection?

A promising new preclinical study has revealed that whole stevia leaf extract possesses exceptional antibiotic activity against the exceedingly difficult to treat pathogen Borrelia Burgdorferi known to cause Lyme disease. The study found...

Read here:

Gut Microbes and the Brain: Paradigm Shift in Neuroscience


The discovery of the size and complexity of the human microbiome has resulted in an ongoing reevaluation of many concepts of health and disease, including diseases affecting the CNS. A growing body of preclinical literature has demonstrated bidirectional signaling between the brain and the gut microbiome, involving multiple neurocrine and endocrine signaling mechanisms. While psychological and physical stressors can affect the composition and metabolic activity of the gut microbiota, experimental changes to the gut microbiome can affect emotional behavior and related brain systems. These findings have resulted in speculation that alterations in the gut microbiome may play a pathophysiological role in human brain diseases, including autism spectrum disorder, anxiety, depression, and chronic pain. Ongoing large-scale population-based studies of the gut….

See the study:

Laser Therapy a New Hope for PARKINSON’S DISEASE

Aggregates of alpha-synuclein in brain cells of people with Parkinson's disease have long been the target of research hoping to cure or at least alleviate the symptoms of dementias often associated with Parkionson's.  Newly publicized research from Chalmers University of Technology in Sweden together with Wroclaw University of Technology in Warsaw, Poland found that it is possible to use a laser driven technology to distinguish the formations of alpha-synuclein proteins from the formations of other functionally beneficial and necessary proteins in the brain.  The same technique, called "multi-photon laser technique" could also be used to eliminate those aggregated proteins…

Read the rest of the story here:

Monday, August 8, 2016

Lyme Advocates Petition CDC

Washington, DC – WEBWIRE – 
Preferential treatment provided by CDC to IDSA violates the federal law that governs the conduct of Executive Branch employees.
Preferential treatment provided by CDC to IDSA violates the federal law that governs the conduct of Executive Branch employees.

Because of CDC policy failures, mismanagement and violations of federal law, hundreds of thousands of Lyme patients experience a greatly diminished quality of life—a tragedy compounded by financial hardships from out-of-pocket costs and lost income. The burden on individuals as well as on our economy is enormous, the suffering is widespread and much of this is preventable.

A D.C. based citizens action group wants the Centers for Disease Control (CDC) in Atlanta to change its stance on the treatment of Lyme disease in the United States.

The Patient Centered Care Advocacy Group filed a "citizen petition" with the Centers for Disease and Control Prevention calling on it to end the preferential treatment it extends to the Infectious Diseases Society of America (IDSA) guidelines for diagnosis and treatment of Lyme disease. The petition was filed in accordance with the Administrative Procedure Act (APA), which governs the conduct of the federal government.

According to the petition, the CDC....

Read the rest of the story here:

Tuesday, July 26, 2016

Lyme in mosquitos in Germany

Wednesday, July 20, 2016

Stevia kills Borrelia - in all three forms

Dr. Richard Horowitz, LLMD and author of "Why Can't I Get Better?" says,

Borrelia burgdorferi has been shown to be able to persist in the body. Prior work on Stevia had shown it to be effective against Borrelia biofilms, and in this paper by researchers at the University of New Haven, Stevia was shown to be effective against different morphological forms, as per the three-antibiotic combination (doxy, cefoperazone and daptomycin) shown to be effective by Johns Hopkins researchers. "J. Feng et al.also showed that the three-antibiotic combination (doxycycline, cefoperazone, and daptomycin) was very potent in eliminating the stationary phase rich persisters of Borrelia. In this study, we provided evidence that Stevia A, as an individual agent, was capable of eliminating the spirochetes and the persisters of Borrelia similar to the reported three-drug combination treatment. Our data also showed that the antibiotics in combination on the persisters of Borrelia was indeed consistent with the previous study". 

Monday, July 18, 2016

Wednesday, July 6, 2016

Amazingly complete list of Lyme disease symptoms

If you're a Lyme patient (or doctor) and want to see an exhaustive list of Lyme-related symptoms, look no further. This is quite inclusive (and a bit amazing):

Tuesday, June 28, 2016

Lancaster County man honored for Lyme Disease research

Lancaster County man honored for Lyme Disease research

A Lancaster County (PA) man received one of two Lyme Poster Awards at the 2016 European International Lyme and Associated Disease Society Conference.

Bob Miller founded the Ephrata-based NutriGenetic Research Institute in 2015 and is its primary researcher.

He has been offering naturopathic treatments for years and became interested in "why some patients with chronic Lyme disease fail to get better with their physician-directed treatment protocol."

Miller reported recruiting about 400 people, half with chronic Lyme disease, to have their DNA analyzed by 23andMe and send him copies, as well as complete a survey on tick-borne diseases.

The award was based on his report of his findings that those with chronic Lyme share similar genetic variants.

Bob Miller's contact info:

15 Pleasure Road • Ephrata, PA 17522

717-733-2003 phone • 717-733-1756 fax

Saturday, June 25, 2016

Even more articles on the connection between Alzheimer's and the gut

A dozen or so in the past decade. Search PubMed for "Proal AD[au]" for them, or get the fulltext preprints of most of them from:

Or you could look at the conference presentations on this YouTube channel:

Link between Alzheimer's and gut bacteria

The subject line says it all. There seems to be a growing body of research and evidence linking neurological disorders and gut health. I find this very promising, of course, just as was the case with peptic ulcers and bacteria in the stomach.

Thursday, June 23, 2016

Pangaea Clinic of Naturopathic Medicine

I found this very educational site today. Among many other diseases, it has a good section about naturopathic treatment for Lyme disease. Check it out:

Friday, June 17, 2016

Genetic diversity of Babesia microti

From Pardis Sabeti: "We have a new study on genetic diversity of Babesia microti, a tick-borne parasite causing the emerging human disease babesiosis, an illness with symptoms similar to malaria found in the Northeast and Midwest United States. We investigated the evolution, geographic expansion, and drug resistance of B. microti. 

You can get a free access version at "

Tuesday, June 14, 2016

Neural Stem Cell Transplants in a Primate Model of Parkinson's Disease

Here is an example of ongoing work on stem cell transplants for the treatment of Parkinson's disease, in which the proximate cause of the condition is an accelerated age-related loss of a small but vital population of dopamine-generating neurons in the brain. Similar transplant therapies have been tested in a number of species, and in human patients over the past decade, but there is a great variety of possible cell sources and methodologies of treatment. Progress towards a standardized therapy emerging from all of this has been frustratingly slow.

Human parthenogenetic stem cells, derived from unfertilized oocytes, can be used to generate unlimited supply of neural stem cells for transplantation. Researchers testing the potential of cell therapy for treating Parkinson's disease (PD) has found that grafting human parthenogenetic stem cell-derived neural stem cells (hpNSCs) into non-human primates modeled with PD promoted behavioral recovery, increased dopamine concentrations in the brain, and induced the expression of beneficial genes and pathways when compared to control animals not transplanted with stem cells.

The researchers also reported that the intracerebral injection and transplantation of hpNSCs was "safe and well-tolerated" for the two transplantation test animal groups with moderate to severe PD symptoms. "Previous clinical studies have shown that grafted fetal neural tissue can achieve considerable biochemical and clinical improvements in PD, however the source of fetal tissue is limited and may sometimes be ethically controversial. Human parthenogenetic stem cells offer a good alternative because they can be derived without destroying potentially viable human embryos and can be used to generate an unlimited supply of neural cells for transplantation."

PD is characterized by a profound loss of function of the brain's basal ganglia, resulting in a loss of dopamine neurons. Experiments using stem cells have offered benefits in pre-clinical studies, but have also provided "a wide variety of patient outcomes." This study used hpNSCs because the cells demonstrate characteristics of human embryonic stem cells, but are not sourced from viable embryos, which may be destroyed in the process. Previous studies with hpNSCs had shown that the cells could also be "chemically directed" to differentiate into multipotent neural stem cells and were able to be frozen for future use. While the study was designed to determine whether the test animals showed greater improvement than the control group, researchers added that a longer outcome period than 12 months may have demonstrated continued improvement and divergence from controls.

Friday, June 10, 2016

Researchers find links between Helicobacter pylori infections and Parkinson's disease

James Anderson
Tue, 07 Jun 2016 00:00 UTC
A common bacteria that infects the human stomach has significant links with worsened symptoms of Parkinson's disease, researchers have found.

Researchers at the University of Malaya analysed a small group of Parkinson's disease patients with and without a common infection of the stomach lining caused by the bacterium Helicobacter pylori. Their results showed that those with the infection, around a third of the total, tested worse in motor problems related to Parkinson's disease.

Wednesday, June 8, 2016

Combination therapy cures Babesiosis in mice

Mon Jun 6, 2016 4:11 pm (PDT) . Posted by: 

"Rick Laferriere" ri_lymeinfo 

*Combination therapy cures tick-borne illness in mice*
Press Release
By Ziba Kashef, /Yale News/, Yale University, New Haven, Connecticut

June 6, 2016

A novel combination therapy cures an emerging infectious disease, 
babesiosis, which is transmitted by the same ticks that transmit the 
agents of Lyme disease, said Yale researchers. This "radical" therapy 
not only clears the infection but also prevents the recurrence that 
often occurs with existing treatments.

The study was published online June 6 in The Journal of Experimental 
Medicine <>.

Babesiosis (bab-e-see-oh-sis) is caused by the /B. microti/ parasite, 
which is most often transmitted through tick bites. It is more common in 
the Northeast and northern Midwestern states, and likely is on the rise 
as infected ticks expand geographically. Infected individuals can be 
asymptomatic, or develop symptoms that range from mild and flu-like to 
severe and life threatening. The parasite can develop resistance to 
existing therapies, leading to relapses after treatment.

For their study, the Yale-led team first tested in mice with diminished 
immune systems four drugs that are currently used in the form of two 
combinations to treat human babesiosis. Only one of those drugs, 
atovaquone, was effective in attacking a target enzyme that, when 
mutated, allows the parasite to develop resistance. Using the mouse 
model, the team observed efficacy with a fifth drug (ELQ) that involves 
a similar mechanism of action as atovaquone but at a different enzyme 
target site. They decided to test the two drugs in combination.

The researchers found that the combination of atovaquone and ELQ-334, at 
low doses, cleared the infection and prevented recurrence up to 122 days 
after treatment.

"This is the first radical cure against this parasite," said Choukri Ben 
Mamoun, associate professor of infectious diseases. "The novelty of the 
study was identifying a combination therapy that will both kill the 
parasite and also paralyze the target enzyme, making it nearly 
impossible for the parasite to develop resistance."

The finding is significant since babesiosis is increasing and up to 19% 
of the ticks and up to 42% of the mammalian hosts (mice and other 
rodents) that carry the bacteria that cause Lyme disease is co-infected 
with /B. microti/.

With this finding, Ben Mamoun and his co-authors can take the next step 
and pursue studies of the combination therapy in people. "We are 
developing a better analog for ELQ that will be used in clinical trials. 
That's what our future studies will focus on — identifying a better ELQ 
that could be added to atovaquone. We could test the safety of the 
compound in humans," he said.

Other study authors include Lauren A. Lawres, Aprajita Garg, Vidya 
Kumar, Igor Bruzual, Isaac P. Forquer, Isaline Renard, Azan Z. Virji, 
Pierre Boulard, Eduardo X. Rodriguez, Alexander J. Allen, Sovitj Pou, 
Keith W. Wegmann, Rolf W. Winter, Aaron Nilsen, Jialing Mao, Douglas A. 
Preston, Alexia A. Belperron, Linda K. Bockenstedt, David J. Hinrichs, 
Michael K. Riscoe, and J. Stone Doggett.

The research was supported by the National Institutes of Health and the 
U.S. Department of Veterans Affairs Biomedical Laboratory Research and 


Yale News <>
Yale University
Office of Public Affairs & Communications
2 Whitney Avenue, Suite 330
New Haven, Connecticut 06510


Tuesday, June 7, 2016

Fighting Lyme Disease in the Genes of Nantucket’s Mice

(C) NY Times

Fighting Lyme Disease in the Genes of Nantucket's Mice

White-footed mice carry the pathogen that causes Lyme disease. A M.I.T. scientist is proposing to create mice that are genetically engineered to break the cycle of transmission. Yousur Al-Hlou/The New York Times 

Can genetically engineered mice save Nantucket from the scourge of Lyme disease?

If the 10,000 residents of the island off Massachusetts didn't have such a soft spot for deer, they might not be entertaining the prospect, which could provide the groundwork for an even more exotic approach to controlling tick-borne diseases on the mainland.

But popular opinion has long opposed public health officials' recommendation of radically reducing the population of deer serving both as a food source for tickscarrying the Lyme pathogen and a convenient place for adult females to lay their eggs.

"The people who get sick yell and scream at me for not doing anything about it,'' said Malcolm MacNab, chairman of the Nantucket Board of Health, "and the others yell and scream at me because I want to kill the deer." Dr. MacNab said nearly 40 percent of Nantucket residents have had Lyme disease.

So when he heard that Kevin Esvelt, an evolutionary biologist at the Massachusetts Institute of Technology, wanted to gauge the island's interest in a new approach, he invited the scientist to present it at a public meeting on Monday.

More Reporting on Gene Editing 

Although deer help spread ticks that carry Lyme, Dr. Esvelt explained to about two dozen residents at yesterday's meeting, the disease can also be controlled earlier in the tick's food chain. Ticks typically contract the pathogen from white-footed mice, which they often feed on while still larvae, passing it on to humans and other mice when they bite again.

Using new genome-engineering tools, he proposes to create mice that are either immune to the Lyme-causing pathogen, or to a protein in the tick's saliva, or both, to break the cycle of transmission.

Continue reading the main story

If that works — and there is reason to think it will — he would then apply for permission to release thousands of the mice on a smaller, uninhabited island. If the number of infected ticks proved to be sufficiently reduced after two years, Nantucket could be next. The release of a few hundred thousand engineered mice over the course of about a year, Dr. Esvelt said, would ensure a stable population of resistant mice.

There is no company behind the project, which Dr. Esvelt estimated could take as long as a decade to complete. But he said he thought he could get government and philanthropic funding because it would provide evidence that might justify the use of another technology he has helped to pioneer, called "gene drive," to attack Lyme disease elsewhere.

In the Northeast and upper Midwest, the areas of the United States where Lyme is most prevalent, it would not be feasible to release enough engineered mice to spread the genes for Lyme immunity through the native mouse population.

An effort on that scale would require the addition of a gene drive, which assures that a given gene is passed to all of an organism's offspring rather than the usual half.

Gene drive technology is complicated because it has the capacity to alter an entire population of a given species, without any sure means of being canceled out if it has unforeseen consequences. It has so far only been used in laboratory experiments.

Dr. Esvelt said he wanted some indication of community support even before he starts looking for Lyme immunity genes in laboratory mice, both because he believes any effort to alter an ecosystem should not go forward without it — and because it would cost tens of millions of dollars. Ultimately, the proposal would need approval from federal and state regulators, as well as a majority of Nantucket's citizens.

"Is this a project you might wish to pursue?'' he asked on Monday. Dr. MacNab, who had anticipated some opposition to the idea, braced himself as Danica Connor, who identified herself as an herbalist, took the microphone.

"I'm the first person to say if you go tinker with Mother Nature we're going to break it,'' she said. "But you know what? Even I want to see where you go with this.''

Nantucket may have competition. Dr. Esvelt said he is scheduled to make a similar presentation on nearby Martha's Vineyard in July.

Friday, June 3, 2016

Lyme disease tips may be taught in schools

 "Because our children spend so much time exploring the outdoors, and because they may not know how to identify a tick, let alone alert their parents should they find one, they are especially vulnerable when it comes to contracting Lyme and tick-borne..."  

Check out this story on 

Thursday, June 2, 2016

Divide deepens over treatment of persistent Lyme disease symptoms

Divide deepens over treatment of persistent Lyme disease symptoms

Weeks after a study debunks use of long-term antibiotics, state legislators approve a measure requiring insurance providers to pay for it.

Some comments on the study design and findings made by a reader of the study who is based in the UK: 

The Berende (Netherlands) study:

a)      Of 1200 people screened  284 were included in the study and 212 completed.
b)      Most patients (87-90%) had been treated multiple times with antibiotics before the study. 
c)       All participants immediately received 2 weeks of IV ceftriaxone and were then assigned into one of three groups for doxycycline, clarithromycin plus hydroxychloroquine, or placebo.
d)      The three groups were treated and re-evaluated using RAND SF-36 self-assessment, at 12 weeks, 26 weeks, 40 weeks and 52 weeks after treatment.
There were no statistical differences in quality of life scores shown in the paper. 

Maybe this would be expected after IV ceftriaxone. 

Relapse and decline in quality of life may be more common with patients given the typical short course doxycycline treatment.

The only data showing outcome over time (Fig 2) tracks only the physical component of the SF-36 data. 

RAND SF-36 may have limitations for quantifying Lyme disease symptoms. 
 The 36 questions can be repetitive. 

For example: Did you feel full of pep?  Did you have a lot of energy? Did you feel tired? Did you feel worn out?

Or vague:  I feel as healthy as anyone I know.  

Or non-specific: For example the pain questions do not discriminate between arthralgia's and myalgia's, or headache.
The complex  neurological symptoms including peripheral neuropathy, cognitive dysfunction, neuropsychiatric problems etc are not specifically scored in this system.

New Lyme initiative needs patients' input

Dear friends,

I'm excited to introduce a Patient-Powered Lyme disease Initiative and encourage your participation:

The Dean Center for Tick Borne Illness at Spaulding Rehabilitation Hospital in Charlestown MA recently helped lead a Lyme Innovation "Hackathon" at MIT and UC Berkeley to problem-solve key issues facing Lyme disease.*

A project that won the support of the judges was a patient-powered crowd source platform to give patients a stronger voice in Lyme disease.

This "Patient-Powered Lyme Initiative" is a patient voice/big data/open data project that will help drive priorities and solutions for those suffering with Lyme disease and tick borne illness.

Results of the initiative will be shared with government leaders to influence research and funding priorities.

If you have, or have had, Lyme disease please participate in our pilot study (instructions and guidelines below) and please share with your friends in the Lyme community and social media.

Registration only takes five minutes. Once registered you have the option of voting on (for/against) all ideas for top priorities and solutions, and you can submit your own ideas and comments, too. There is also a place to briefly add your story about your Lyme disease journey. Please follow the guidelines below for logging into the site and inputting your ideas. Questions or feedback? -please contact me at or 617-686-8185. The project is being led by Kerry Lang, the mental health counselor at the Dean Center. I am on the project team as well as a site moderator. Thank you for your participation!


1.    Click this link to enter the site:

2.    Click register at the top right of page

3.    Fill out your info. Site will send you an email confirmation. Check your email to validate registration

4.    Once you have an account, choose a password

5.    Vote for/against the ideas that have been posted as Top Priorities for Lyme Innovation and as Solutions for Diagnostics, Treatments, Rehabilitation and Prevention

6.    Summit a new idea if you have a new priority or solution

7.    Feel free to add comments

Guidelines for Submitting Ideas and Comments:

Top Priorities for Lyme Innovation-

These ideas should consist of objectives you would like our government leaders to hear and focus on to address the Lyme disease epidemic. Please read through and vote for/against existing ideas and feel free to add new priorities. Please note new ideas will be moderated and may not be visible immediately.

Solutions for Lyme Disease Diagnostics, Treatments, Rehabilitation or Prevention-

Please vote on and bring forth ideas that represent solutions.


Comments must be respectful, educational and/or solutions-oriented and will be moderated.

Complaints about specific institutions, hospitals or doctors are not appropriate in this forum and will be deleted by moderators.

When commenting, please keep to the topic headings.

Please try to avoid simply making complaints. Instead, please offer proactive and constructive solutions to change the Lyme disease landscape.

Examples of appropriate educational comments include personal anecdotes about how many doctors you've seen, how long misdiagnosed, how much this disease has impacted you financially, physically, emotionally, treatments that have worked, etc.

Try to keep your comments short (less than 50 words preferable, and not to exceed 150 words)

Let your voice be heard:

Again, this platform is innovation and solutions oriented. -Let's not get caught up with politics but rather let's bring the power of the patient voice behind ideas that will move us forward with the best priorities and solutions to address the issues facing Lyme disease.

Please share this project with social media and anyone you know in the Lyme community.

Thank you for your time. Thank you for letting your patient voice be heard.

Enjoy your summer!

Warm regards,

Nancy Dougherty
Advisory Board Member 
The Dean Center for Tick Borne Illness
Spaulding Rehabilitation Network

*A bigger follow-on Lyme Innovation Hackathon is taking place on June 17-19, 2016, at the Microsoft Nerd Center in Cambridge MA and all problem solvers are welcome to participate. (To learn more, please visit Before the June event we encourage your participation in our patient-powered initiative. Thank you!