LYME DISEASE PATIENTS FAILED BY DOGMA NOT BASED ON SOLID SCIENCE

Massachusetts

Enactment of mandated insurance coverage for Lyme disease treatment in Massachusetts.

Passage of H4491 showed how advocacy groups, activists, Lyme patients, and their supporters can work with legislators to bring about real change.

to read further go to Lymedisease.org 

 https://www.lymedisease.org/good-job-massachusetts/ 

I copy below an important letter that Dr Neil Spector sent to Governor Baker - this letter is a lesson for all those who deal with patients with Lyme Disease.

"Governor Baker,

It is with great concern for the welfare of the residents of the Commonwealth that I urge you to support Bill H4491.

I have been an academic medical oncologist and cancer researcher who led the development of two molecularly targeted cancer drugs. I have published basic and clinical research in the top tier, peer reviewed journals. My cancer research and clinical oncology career was launched at the MGH and Dana-Farber Cancer Institute. I am also a survivor of a devastating case of Lyme disease that was misdiagnosed for several years.

I have been in clinical and basic for 25 years. As a scientist, I understand there are relative absolutes when it comes to human biology. The real world experience changes medical practice. When I was a resident in training, the dogma was that peptide ulcer disease was caused by stress and increased acid production. The notion it could be caused by a bacterial infection was considered by mainstream medicine as being ludicrous and representing quackery. Scientists who proposed that a bacteria, h. pylori, was an underlying cause of peptic ulcer disease were laughed at. Well, two scientists who were laughed at by the medical community ended up winning the Nobel Prize in Medicine for demonstrating that h. pylori caused peptic ulcer disease. That "wacky" idea changed the practice of medicine in terms of how we treat peptic ulcer disease. There are many other examples of how dogma in our medical system thwarted and delayed seminal discoveries that changed medical practice.

People in your state and around the country are suffering, falling through the cracks of our medical system. These folks have Lyme disease and the co-infections that accompany Lyme disease. Similar to the days before the acceptance of h. pylori as a cause of peptic ulcer, there is a dogmatic approach that says that chronic problems from Lyme or co-infections that persist beyond the IDSA algorithm of care does not represent persistent infection. However, based on excellent research from prestigious institutions such as Johns Hopkins Medical Center, hardly a bastion of quackery, we know Borrelia burgdorferi, the bacteria that causes Lyme disease, becomes resistant to the standard antibiotics prescribed according to Infectious Disease Society of America (IDSA) guidelines. We know there is persistent infection in primate studies based on peer reviewed research from scientists at Tulane and other institutions. Some may 'poo poo' preclinical research. The reality is, we as scientists rely on research in the laboratory to model human diseases. We would not have made the transformative strides in Cancer if we had turned our backs on preclinical research.

Studies suggesting that prolonged antibiotic therapy is not effective, the basis for the dogmatic approach denying access to additional antibiotics to patients who are physically suffering, are grossly flawed in their methodologies.

The truth is, we have failed our fellow human beings who are suffering by accepting a dogmatic approach that is not founded on solid science. In 2016, where cancer patients are afforded cutting edge genomic science to guide diagnosis and treatment, Lyme disease diagnostics are still rooted in less than cutting edge and low sensitivity indirect immune response diagnostics (ELISA and Western blot, the latter I have performed hundreds to thousands in my own research so I'm very familiar with the strengths and weaknesses of the assay). This doesn't take into account the fact there are different variants of Borrelia that might not be detected by current diagnostics.

I am not a Lyme disease physician. I had to learn more than I ever cared to know about this disease(s) due to my own misdiagnosed case that necessitated a heart transplant and nearly cost me my life.

As a physician- scientist, there are more unanswered than answered questions. For example, does everyone with chronic symptoms after antibiotic therapy for Lyme disease have active, persistent infection or some other pathology triggered by the infection? We currently DON'T have the tools to make that determination. There are numerous examples of infectious diseases that require prolonged antibiotics and cocktails of antibiotics.

I fully understand the dangers of unnecessary antibiotic therapy on the development of resistant organisms and on the all important protective normal gut microbiome. Having said that, there are folks whose lives were ruined by Lyme disease until they found compassionate and licensed physicians, many trained in infectious diseases and rheumatology but not members of IDSA who treat these folks with cocktails of antibiotics. Many of the people have their lives restored. Does that prove they have persistent infection as credible peer reviewed published research supports? I'll let you decide.

I've met so-called LLMDs [Lyme Literate MDs] who have more practical experience with Lyme disease and co-infections than IDSA counterparts. These LLMDs are thoughtful, read the latest literature, and as best they can, try to improve the lives of people in need.

We don't restrict treatment of diabetes MRI endocrinology, or treatment of asthma to pulmonary specialists. Why deny people suffering with Lyme disease access to care from highly experienced clinicians?

If you want to focus your attention on the many unanswered questions surrounding Lyme disease and co-infections, I would suggest you look to the State of Texas for innovation. Texas established a $3 billion fund called CPRIT (Cancer Prevention and Research Institute of Texas). CPRIT funds researchers in the state of Texas, in a peer reviewed process, to conduct transformative research. I consider the Commonwealth of Massachusetts to be a highly progressive state when it comes to innovative biomedical research and healthcare delivery. Massachusetts is at the epicenter of Lyme disease. What an innovative move for the state government to establish a research fund, which is sadly lacking at the federal level, to help its citizens and ultimately those around the country by funding research at Mass institutions to develop better diagnostics and therapeutics and greater insight into this disease that for many is not so easy to diagnose and cure.

Thank you for your time and consideration.

Neil Spector, MD

Sandra Coates Associate Professor Medicine

Duke University Medical Center

Durham, NC 27705"

TOP SCIENTISTS' COLLABORATION ON LYME DISEASE - DIAGNOSTIC TOOLS AND EFFECTIVE CURE

Published on Apr 20, 2016 

Ten of the world's top scientists from leading institutions discuss their scientific insights on the problems and potential solutions for Lyme disease.

Senator Richard Blumenthall US Senate Speech

'The cases of Lyme are exploding in number and their severity impacts our economy as well as quality of life for Americans'

Introduced by David Rothman- Lyme Advocate

CDC reported 10 fold increase in the number of cases in 2013.

Dr Neil Spector Cancer researcher talks about implications in organ donation. He had a heart transplant due to undiagnosed Lyme Disease.

'In the era of genomics are we using archaic unreliable methods to test for Lyme?'

Dr William H Robinson Stanford University talks about the need to develop next generation tests that are much more accurate and sensitive to identify people with Borrelia Burgdorferi as well as other tick borne infections.

Dr Safwan Jaradeh Stanford University Neuromuscular and Neurological faculty. 'Nobody seems to think well could it be something like Lyme.'

Dr Brian Fallon Columbia University 

Director of the Lyme and Tick-borne diseases research center at Columbia.

 says - Lyme can cause many symptoms he talks about a child who manifested with compulsive cycling behaviour and anorexia which was caused by Lyme Disease and with treatment symptoms went away.

Dr Neil Spector goes on to say- 'Over 300000 cases a year I think demands more attention than Zika virus which overnight becomes a W.H.O. global health crisis. So it's not to minimize the problems of Zika but it is saying there are children who are equally suffering with Lyme disease and children who may be through the consequences of Lyme Disease dying and adults dying through consequences of Lyme Disease.

Stand 4 Lyme founder Sherry Cagan and her husband, Laird have joined forces with with Stanford Scientists to pave a medical path to wellness for patients at all stages of Lyme Disease. Stanford collaborative research with Harvard, Johns Hopkins and Columbia Universities. 

Dr Philip A Pizzo Stanford University Professor of Microbiology and Immunology

Dr Pizzo appointed the Stanford Lyme Working group a collaborative effort between Stanford researchers and other major universities.

Dr Laura Roberts Stanford University says 'Lyme Disease has been neglected scientifically with the Lyme disease working group at Stanford and other universities we are hoping to change that.'

Dr William Robinson - 'Lyme disease shares molecular mechanisms with many different diseases both microbial infections as well as certain inflammatory diseases and the work of the Stanford Lyme working group can help uncover these mechanisms.

Irv Weissman MD Stanford University is working on macrophage problems and persistently infected cells.

Dr Nevena Zubcevk Harvard University is working on - ' Testing blood banks for Lyme and co infections' and also clearing up difficulty we are currently having  with 'In utero transmission of Lyme'

John Nathanial Aucott Johns Hopkins University says this has been an ideal collaboration it has really advanced our ability to do research in Lyme Disease, we collaborate with Dr Bill Robinson at Stanford to develop bio markers or tools to better measure Lyme Disease.

Ying Zhang M.D. PhD Johns Hopkins Medicine

 says' Stand 4 Lyme unique strategy in partnership with top notch scientists from Stanford will ensure that best minds and cutting edge research and diagnostic tools are applied to building a more effective cure  for this complex and illusive disease.