Find a Lyme doctor, and latest updates in the 'Lyme wars' between ILADS and IDSA

I noticed some news posts on Lymedisease.org and thought I should mention them and send everyone a link:

https://www.lymedisease.org/

Among other things, there is a Lyme symptom checker, an update to a New York TV station's series called "The Lyme Wars" that first aired Oct of 2017, and a list of Lyme-Literate-Medical-Doctors (LLMDs) on the page. 

-Bob

Oxford Diagnostics Laboratories Imugen test for Lyme and Co-Infections

The company has lots of websites.

Here's why:  Oxford Immunotec Enters into Definitive Agreement to Acquire Imugen

http://www.oxfordimmunotec.com/international/

Management Team

Board of Directors

http://www.imugen.com/

http://www.oxfordimmunotec.com/north-america/products-services/tick-borne-disease/imugen/

Over 25 years ago, a small team of Massachusetts Department of Public Health State Laboratory employees, working alongside leading clinicians in the emerging area of Lyme disease, recognized that the diagnostic tools available to physicians and laboratories were limited. This motivated team knew patients deserved better and in 1989 founded Imugen. The roots of Imugen began in providing fast, trusted and accessible testing for evidence of Borrelia burgdorferi infection, the infection that causes Lyme disease. Over time, these founding principles have been applied to other tick-borne infections and have grown to represent a menu of Imugen testing services.

Innovation remains embedded in Imugen's testing services, with progressive PCR and serology test offerings. This comprehensive testing including PCR and serology may offer a greater opportunity to detect evidence of tick-borne infection.* Other innovations include a robust, internal database of infection positivity rates by region, the identification of Borrelia miyamotoi infection in the first clinical case in the United States in 2012 and, most recently, the completion of a three-year clinical trial to evaluate a testing algorithm for detecting Babesia microti in donated blood.

In 2016, Imugen became part of the Oxford Immunotec family through an acquisition. Testing services are being expanded beyond the Northeast to provide clinicians across the United States with comprehensive testing solutions for tick-borne infections.

Clinical Trial: https://clinicaltrials.gov/ct2/show/NCT03201042    (See contact people at the end of the page noting its immunotec)

Oxford Immunotec Announces Update in Patent Infringement Litigation

"While we are disappointed that the court did not grant a preliminary injunction prohibiting the sale of Qiagen's QFT-Plus product in the U.S. before trial, we are encouraged by the court's rulings on the issues of validity and obviousness," said Dr. Peter Wrighton-Smith, Chief Executive Officer of Oxford Immunotec. "We continue to look forward to the further defense of our patents at the upcoming trial in January."

Oxford Immunotec and QIAGEN N.V. Settle Patent Infringement Lawsuit

Blood test finds toxic Alzheimer's proteins

This is big deal! Apparently there is a new technique for diagnosing Alzheimer's disease years before symptoms such as memory loss and dementia manifest.

-Bob

Blood test finds toxic Alzheimer's proteins - http://www.bbc.co.uk/news/health-42878721

Researchers are worried that a brain illness known as 'zombie deer' disease may start infecting humans

Researchers are worried that a brain illness known as 'zombie deer' disease may start infecting humans

Canadian researchers are concerned the disease could potentially start to infect humans who eat deer, elk, moose, or other members of the animal family that carry misfolded proteins.

https://www.msn.com/en-us/health/medical/researchers-are-worried-that-a-brain-illness-known-as-zombie-deer-disease-may-start-infecting-humans/ar-AAv21tc?li=BBnb7Kz

 

Class-action suit against the French government filed by Lyme patients

http://rmc.bfmtv.com/emission/maladie-de-lyme-300-malades-vont-deposer-plainte-au-penal-des-janvier-1331597.html

IN FRANCE – 300 people with Lyme disease will file criminal complaints in early January 2018 against the State, the National Agency 

for the Safety of Medicines and Health Products (ANSM) and the National Reference Center (CNR) in Strasbourg for influence peddling, 

abuse of company or government assets, concealment of abuse of government or company assets,endangering the lives of others, 

violation of the principle of independence of experts and conflict of interests.

This complaint aims in particular "to uncover the links of interests maintained between the National Reference Center of Strasbourg and the laboratories". The complainants believe that screening tests are unreliable.

 

The director of the CNR, is an expert mandated by the State and the ANSM, who also collaborates with the laboratories that manufacture these tests and participates in the validation committees of the tests. He may be charged with criminal offense, influence peddling, corruption and misuse of corporate assets. 

 

The plaintiffs also target the State and the ANSM for endangering the lives of others and manslaughter (patient suicides) and also lack of vigilance in the choice of experts and the quality of tests.

 

According to one of the plaintiffs' lawyers, by imposing a single testing technique, a single screening protocol and favoring a certain number of laboratories, the health authorities "did not play their role of supervisory or regulatory authority, but actually became employees of the pharmaceutical industry."

 

Today there are tens of thousands of patients who have not been diagnosed and many of them are in absolutely catastrophic medical, material and moral situations. 

 

The lawyers claim the responsibility of the actors of public health, but also  $611,345.00  of damages per patient. 

 

"Absurd" tests:  Today, the Elisa test is used to find out if a patient has Lyme disease. Elisa is the only test that exists in France to detect the disease. If it is negative, the exams stop there for the patient. If it is positive, the doctors give a second test to the patient, much more precise, the Western Blot. Except that the first test detects only 3 to 5 different bacteria that can cause Lyme, whereas in reality, there are more than ten. To find out if they have Lyme or not, some patients have to go to veterinary tests, much more accurate, or go to other countries like Germany, where the tests are more advanced.

 

Some doctors do not stop at the negative test and continue to see patients to determine if they have Lyme or not, but they are then sued by the College of Physicians and Health Insurance for 'non-compliance'. The lawyers therefore ask for the withdrawal of these tests that they consider "absurd".

The antioxidant Ebselen prevents neurotoxicity

The antioxidant Ebselen prevents neurotoxicity and clinical symptoms in a primate model of Parkinson's disease. - PubMed - NCBI

https://www.ncbi.nlm.nih.gov/pubmed/11085889

This looks promising. 

-Bob

Weird EYE problems related to Lyme and Bartonella infection

Some of the "Weird" Eye Problems 

Associated With Lyme Disease & Bartonella

Lyme patients (approximately 5% +/-) often describe symptoms related to their vision that are dismissed or misdiagnosed by eye doctors not trained to recognize these problems.  A pat on the head, ignoring your questions, a rolling of their eyes, or a declaration of "all is well" when you know it isn't will let you know they don't know.  

If the symptoms or patient's problems are acknowledged they are often reported to be related to something other than an infection related to Lyme disease.  To note, Bartonella is sometimes the cause of "weird" eye symptoms too.  

If you experience any "weird" eye/brain symptoms you should see your local eye doctor.  If, after the typical causes for these various symptoms have been ruled out, there doesn't appear to be an explanation for the mild to severe visual disturbances you are experiencing, you are not alone and there is still hope.

These "weird" eye/brain symptoms, some of them described below, can best be addressed by treating the Lyme related infections that cause eye/brain problems such as meningitis, encephalitis, brain swelling, optic nerve damage, toxins, etc.

See the rest of the page at this site: 

https://sites.google.com/site/marylandlyme/symptoms-information/eye-problems/eye-brain--neurological-symptoms

IVIG and small fiber neuropathy

Small fiber neuropathy (unmyelinated fibers in the skin and the autonomic nervous system) can account for the bulk of the pain and autonomic symptoms in Lyme patients. Until now there have not been any treatments for this other than symptomatic.

However, for large, myelinated fibers that become demyelinated, these lesions can be reversed with IVIG treatment.

Interestingly, lots of Lyme patients have both.

IVIG can get approved by insurance as a treatment for demyelination (as initially diagnosed with EMG-NCV studies) but so far insurance will not approve IVIG for biopsy proven (simple punch skin biopsy) small fiber neuropathy.

Because Lyme patients usually have both, treatment gets approved to treat the large fiber neuropathy but lo and behold, the small fiber stuff (pain and dysautonomia) can also clear.
So finally the attached article demonstrates this. Note that it comes from Harvard and does not mention Lyme disease- that is what got it published.

This is especially important as the EMG-NCV studies will not detect small fiber problems at all, and more importantly, will miss possibly half the cases of large fiber neuropathy, thus preventing insurance coverage and needed treatment. In contrast, skin biopsies specifically stained to see small fibers picks up a much higher percentage of cases, offering hope for a more sensitive way to get diagnosed and treated.

Whether this will be enough to get insurance to cover IVIG for small fiber neuropathy is yet to be seen.
Please share this with all the docs (Barbara- can you send this out to the ILADS group? Put it on the website?) and especially the neurologists you may know.

Thanks!
Dr. B

Joseph J. Burrascano Jr. M.D.
Water Mill, NY, USA
Sent from my LapTop

Antitrust Lawsuit Pushes Chronic Lyme Disease into Health Care Limelight

Here is a 182-page document written and (c) by LDA (Lyme Disease Association) discussing conflicts of interest in Lyme research and patient care. It is not up to date, and probably there are many more conflicts of interest since this was published in 2001. But it makes for interesting and educational reading, so I am posting it here. This is copyright LDA, and I post it here only for readers' education to promote better understanding of Lyme and associated diseases. 

-Bob 

Mayo Clinic Trained Physician - Dr Miller Speaks out about Lyme Disease

What's happening Shari Blanchard shared  Mayo Clinic Trained Physician - Dr Miller Speaks out about Lyme Disease LymeHope Dr Miller is an experienced retired Mayo clinic trained physician who practiced Internal Medicine and Rheumatology in... Read more at LymeHope LymeLight Foundation shared  Quiana - Full Remission - LymeLight Foundation Read more at LymeLight Foundation