Saturday, 25 January 2014


This post is a round up of several news items in no particular order:-

From ILADS Facebook page link 

CASE #09-CV-1039MCA GLIBOWSKI VS. U.S. OFFICE OF PERSONNEL MGMT. History was made, and has set a precedent, for all Lyme disease patients in a lawsuit, in which attorney, William L'Esperance, a longtime part of the Lyme Disease United Coalition, has won a case where the Office of Professional Management (OPM), on the side of the insurance company, has been overruled. The Lyme disease patient, in the lawsuit, submitted bills for hundreds of medical services, treatments, and tests. The court ruled that the Lyme disease patient wins the case without regard to the medical necessity of the patient; or whether the medical treatments or tests were medically necessary or experimental or investigative. The case is GLIBOWSKI VS. US OFFICE OF PERSONNEL MGMT., 09-CV-1039MCA (US DISTRICT COURT, DISTRICT OF NEW MEXICO). The case is sealed. However, attorney William L'Esperance has filed the case and outcome with the United States Federal Courts to set precedence to aid all Lyme disease patients in lawsuits against their insurance companies, and OPM, for not covering the ILADS guidelines or Dr. Burrascano's guidelines in treatment of Lyme disease. What does this mean to each of us? 1. The door has opened for Lyme-treating doctors to accept insurance -- once all is established in U.S. Federal Court. (I will keep you posted about the advance of this outcome.) 2. You may now sue your insurance company for past bills not covered or reimbursed by insurance. The OPM cannot hold you back -- in other words, the IDSA'S guidelines are no longer accepted. To contact our hero, attorney Bill L'Esperance, e-mail: William L'Esperance, Counselor at Law P.O. Box 90668 Albuquerque, NM 87199 __________________________________________________________________________________________ William L'Esperance does not want to take on new clients. He is willing to be a resource for out-or-state attorneys handling similar cases.

Resurgence of Persisting Non-Cultivable Borrelia burgdorferi following Antibiotic Treatment in Mice Plosone link 

'The agent of Lyme borreliosis, Borrelia burgdorferi, evades host immunity and establishes persistent infections in its varied mammalian hosts. This persistent biology may pose challenges to effective antibiotic treatment.'
I posted an interesting presentation from Stephen Barthold previously here

Lyme Disease May Be Sexually Transmitted, Study Suggests
This study was an International collaboration link  

“Our findings will change the way Lyme disease is viewed by doctors and patients,” said Marianne Middelveen, lead author of the study presented in Carmel.

“It explains why the disease is more common than one would think if only ticks were involved in transmission.”
“The presence of the Lyme spirochete in genital secretions and identical strains in married couples strongly suggests that sexual transmission of the disease occurs,” said Dr. Mayne.

“We don’t yet understand why women with Lyme disease have consistently positive vaginal secretions, whilst semen samples are more variable.

Obviously there is more work to be done here.” Dr. Stricker pointed to the unknown risks of contracting Lyme disease raised by the study.

“There is always some risk of getting Lyme disease from a tickbite in the woods,” he said. “But there may be a bigger risk of getting Lyme disease in the bedroom.”

Interesting comments re above study from Dr MacDonald on Lymenet Europe forum link
'These observations re-open for disusssion and critique the "sexul transmsiison" burgdorferi borrelia pathways in the human host and presumably in mammalian hosts in general. These observations constitute yet another "biological amplification " pathway for borrelia transmission, independent of Tick Salivary vehicles or hypostomes in the human dermis. The linkage of lichen sclerosus to burgdorferi borrelia infections by Eisendle, and colleagues, established the cognitive framework for urine containing borrelia to possibly directly traverse female Vulvar skin to establish a chronic Borrelia dermatosis [Lichen Sclerosus}

Latest News - Lyme Disease Action  link 

The latest one
On December 16th LDA had a meeting at the Department of Health. The purpose was to use cases documented through LDA’s help desk to highlight to the Department the shortcomings in the current provision of care for Lyme disease patients Read more under News on LDA website link

News from Canada  link

3. Elizabeth May (Green): Bill to create a national Lyme disease strategy (C-442) The Green Party leader is asking for public health officials, researchers and patient advocates to come together and develop a national strategy for diagnosing and treating Lyme disease – a tick-borne disease that can be cured with antibiotics but which can cause severe damage to the heart and nervous system if not treated. “At least for those MPs representing regions of Southern Canada, we hear from constituents suffering from Lyme disease all too frequently,” May wrote on her website this fall. “Many are unaware that the tick bite could lead to permanent disability if not diagnosed correctly and treated promptly. We need to do more.”

There are so many tragic and sad stories that our Health Authorities are not aware of, this is just one of the many sufferers Elizabeth link 

Elizabeth put out a cry for help to source medication that was no longer available for her. Through an International collaboration on Facebook the Lyme community came up with several ways to source the needed medication and was able to pass that information on to one of Elizabeth's helpers.

Together science, patient support and advocacy is moving the agenda forward and making our Health Authorities around the World look at the evidence. The science will not always be denied and the patients will not all lie back when they find treatments that help them.

Tuesday, 14 January 2014


Our Story in 2 Minutes from HealClick on Vimeo.

Today is the launch of HealClick, a website matching patients with similar conditions so they can share relevant treatments and experiences. Above is a 2-minute video illustration of who they are and what they're doing:

I have been visiting Internet sites now over the last 10 years since becoming ill and having many different diagnosis. It is clear to me that patients are becoming much better informed and sharing information and research that they can discuss with their doctors in order to find the best treatments to help themselves. No longer must we suffer in silence depending on the sole opinions  and experiences of one doctor, there is so much more available that might help us. 

This sounds to be a very promising website where patients can share information and maybe it may help to lead to better research projects. 

Patients do seem to be leading the way over treatments and research agendas in some of these little understood illnesses - just the few that I have been diagnosed with Fibromyalgia, ME/CFS, Musculo skeletal disease, Polymyalgia Rheumatica and finally Lyme disease (which once treated for, on long courses of antibiotics improved my health), all have overlapping symptoms which are also found in many other diseases.

Sign up at 

Help us grow at
Below is a summary of Healclick's aims. 

- HealClick is completely free and will always be. 
- We are a site created for patients by patients. Our co-founders tried to find a site that filled their needs for social support and medical information sharing. After they couldn't find what they were looking for they decided to just make it themselves. 
- Our site is for patients only. We don't recruit Doctors or researchers because we want to hear directly from patients about what works for them and what doesn't. 
- Matching is what sets us apart. Our site gives you a percentage match to every other member. This way you know at a glance how similar you are with regards to your diagnosis, symptoms, and even treatments. 
- Start any kind of topic. If you have a question or an experience to share, we want to hear it. 
- Review any type of treatment. Tell us about your experience, and compare your results with others.
- Our site offers unique social support. The founders, writers, and community managers are all patients.We foster a positive and caring atmosphere where people can share lighthearted humor and successes as well as support each other through hard times and setbacks. 
- The medical information that our members provide won't go to waste; it will be used to fuel new research! We will share the anonymized data with researchers that we believe have patients best interests in mind. More information on how we de-identify data here: 
- Privacy is incredibly important to us. Not just with regards to data for research, but with the entire site. Usernames, pictures, and profiles will never be made available to the public. 


Patient power, what a difference it made to the AIDS communities in the early 1980's and that was without the resources we have today on the Internet. I look forward to following the development of this new website Healclick.