Lyme Disease Continues its Spread

Lyme Disease Continues its Spread, MetroWest Daily News & Milford Daily News

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  By Laura Henze Russell/Guest Columnist

  Posted Aug. 24, 2015 at 1:39 PM 

  Wonder if there is a Lyme epidemic in Massachusetts? The MetroWest had some of the highest incidence rates in Massachusetts in 2013. Middlesex County had a 450 percent growth rate in reported Lyme cases from 1997-2001 to 2007-2011, and the largest number of cases of any county in the commonwealth.

  A CDC map shows Lyme marching on – along with nasty co-infections ticks carry – from its discovery in 1981 in Connecticut and Long Island, New York, throughout the Northeast and MidAtlantic to the Upper Midwest, with beachheads scattered in the Midwest, West and South. The first diagnosed cases came from the Lyme, Connecticut, area.

  Official cases reported to the Centers for Disease Control (CDC) have risen to 30,000. CDC officials say the real number is about 10 times more, 300,000, based on a survey of clinical testing labs (2008) and medical insurance claims (2005-2010). Observers say it is much higher now, as it seems almost every family has someone touched by Lyme – sometimes many times.

  Why is Lyme a big deal? Caught early, a short course of doxycycline is usually sufficient. Some doctors prefer doxycycline monohydrate capsules to the cheaper generic hyclate, and it has been reported to cause less nausea than that tablet form. When Lyme – transmitted by tick bites – is treated early, the parasite is killed before it can establish its reproductive life cycle in the body.

  When it is not caught early, there is potential for longer-term illness and complications as the reproductive cycle is established within the body. There is controversy over whether the parasite is still present, perhaps in cyst form, or hiding in biofilm, spinal fluid, or other hard-to-treat areas, waiting to emerge again, especially in those whose immune systems are now compromised. The CDC disagrees, and calls it "Post-treatment Lyme Disease Syndrome" (PTLDS) as a result of immune changes instead of ongoing infection.

  Some physicians with extensive experience treating Lyme patients, who belong to International Lyme and Associated Diseases Society (ILADS) and are called “Lyme literate” doctors, call it chronic Lyme or persistent Lyme. Lyme disease symptoms vary greatly among people, and also by staging of the disease. Seventy percent got the telltale rash which is not always present and fades with time, 30 percent arthritis, 9 percent facial paralysis (Bell’s palsy), and 6 percent nerve pain, brain swelling (encephalitis) or heart problems.

  According to specialists like Dr. Richard I. Horowitz, author of “Why Can't I Get Better?” Solving the Mystery of Lyme and Chronic Disease,” Lyme is a “great imitator” of many chronic diseases, including chronic fatigue syndrome, fibromyalgia, autoimmune conditions like M.S., psychiatric conditions like depression and anxiety, and it also causes significant memory and concentration problems, mimicking early dementia. He writes that co-infections are a significant and growing factor in tick-borne diseases. They require different tests and different treatments.

  Diagnosis, testing and treatment are all the subject of controversy, but there has been movement to recognize the validity of both ILADS and Infectious Diseases Society of America (IDSA) guidelines, to get insurance to cover more forms of treatment, and to stop disciplining doctors who use the ILADS guidelines. The Massachusetts legislature passed a law to that effect, and efforts are underway in Congress.
  

  What does all this mean for us?

  First, do your best to avoid ticks like the plague, spray your yard and clothes, wear tick protective clothing, and do thorough daily tick checks of children, pets and you. If you find one embedded, use special tweezers and techniques or have it removed or it may break off and flood you with a full exposure to Lyme immediately, as happened to me last year, so I caught it again.

  Second, if you see or suspect you have a tick bite, have a bull’s-eye rash or have fever, pain or Lyme-like symptoms, get to a doctor right away. Early antibiotic treatment now can forestall months, years or a lifetime of costly, debilitating, and harder to treat health problems.

  Third, if you are sick and tired with fibromyalgia, chronic fatigue syndrome, arthritis and other migrating pains, brain fog, memory loss, neurological or other mystery symptoms, don’t just chalk it up to aging. Even if you have been treated for Lyme disease in the past, it may not have been the right protocol to rid Lyme and co-infections from your system, or you may have been reinfected by another bite. Find an ILADS doctor and get another opinion.

  Fourth, it is time for broader action. Dr. Horowitz outlines a plan for Centers for Excellence in treating Lyme and Chronic Diseases. Congress is starting to pay attention. Massachusetts needs to do more. It is high time to march on Lyme.

  For diseases like HIV/AIDS, there are public education and screening programs, and aggressive coverage of lifetime therapies to forestall progression of disease. For diseases like malaria, there is prophylactic treatment routinely prescribed for the duration of travel and living in areas where it is endemic. Is such an approach needed for Lyme? Do we need prophylaxis in season? Do we need routine tests and screening? Can we develop safe and effective vaccines against “tick spit?”

  For Eastern equine encephalitis and West Nile, we have county mosquito control programs. It is harder for Lyme as tick habitat is everywhere, not just stagnant water. Would deer control help? Driving to Dr. Richard Horowitz’s excellent “Living Well with Lyme” weekend workshop at the Omega Institute in New York’s Hudson Valley, I nearly hit a deer as it sped across six lanes of the Mass Pike a few hundred yards ahead. Not long after, a dead deer lay on the median. Do we put up deer warning signs on the Pike like the Hudson Valley highways, and take steps to control the booming population?

  
  

  Hearing stories of misdiagnosis, pain and denial faced by many at the workshop, one got the sense that the U.S. has stronger laws to protect deer than patients with complex chronic diseases. Can we recognize Lyme strain variations when it comes to lab tests, where we are behind Europe which tests for three Lyme strains instead of one? Add tests for common co-infections? Have insurance companies cover expanded treatments when needed for health instead of deny them? It is important to treat Lyme and co-infections in their different lifecycle phases, to cover complementary and supportive therapies that boost the immune system, and to recognize that not all patients respond equally well to standard treatments once infections have been established.

  In addition to learning what it takes to heal ourselves and treat others as patients or physicians, we need to reboot health systems, agencies, insurers and providers to work for us - for our health, instead of against us, lagging far behind – especially on the hidden health challenges of our time.

  Laura Henze Russell is the principal of Precision Research and Communications, and Hidden River Health Challenge. Email her at laurarussell2@comcast.net. 

Petition for Medical and Dental Device Safety Urgent Reform (MEDDSURGE)

Please sign this Petition to Congress & Administration: Medical & Dental Device Safety Urgent Reform (MEDDSURGE)

Many friends have been harmed from FDA approved medical and dental devices. 
The regulations are nearly four decades out of date. Fix them now.

Fix FDA regulations for medical devices and dental materials! Unlike for prescription drugs, 

OTCs, personal care and food products, there is NO information required to go to the 
patient or parent about materials they contain. Patients can experience harm from devices 
ranging from dental amalgam fillings to Essure, Mesh, joints, implants, stents and more. 
Reactions vary based on gene types that impact how well we clear materials that are not 
natural to the human body. There is NO pretesting to determine if you will have a reaction in
advance as is recommended for hair color (although a one-time test is available). Peer 
reviewed research links autoimmune, neurological and other illnesses with devices.

For dental fillings, there is NO right of written informed consent. FDA warnings for dental
amalgam (called silver fillings, but 50% mercury) are required only from manufacturer to 
dentist, NOT to patients. There is a flawed MedWatch reporting system for dental device 
reactions, and dental information does not go into patients' Electronic Medical Records so 
it is hard for doctors to connect illnesses. Dental insurance does not cover the higher cost of
replacing amalgam fillings when medically indicated. Patients face high costs and lost income.

Enact Medical and Dental Device Safety Urgent Reform (MEDDSURGE)! 

Refocus CDC and National Institutes of Health (NIH) funding on Chronic Diseases. Provide 

treatment for patients with device illnesses. Ask Surgeon General to take emergency action. 

Put patient safety first.

SIGN THE MEDDSURGE PETITION HERE

From MetroWest Daily News July 14, 2015

• Russell: Congress can do more to fight ‘hidden health risks'

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   By Laura Henze Russell
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  Guest Columnist

  Posted Jul. 14, 2015 at 3:52 PM 
  
  
  

  The 21st Century Cures bill, passed the U.S. House of Representatives on July 10th, would provide $8.75 billion in funding over five years to the National Institutes of Health (NIH), and $550 million in additional funds for the Food and Drug Administration (FDA) to speed discovery and approval of drugs and devices. It needs a little tweaking by the Senate as it takes up its own biomedical innovation bill to accomplish the ultimate objective of curing the most Americans at the least possible cost. This can enable us to begin to pay down the national debt, and finance efforts on more complex health problems.

  We would do well to focus attention on the common causes of chronic diseases, and the hidden health epidemics that are endemic to our time. These include Lyme and various tick-borne coinfections, mold that is hidden and off the radar screen, and surprisingly, medical and dental devices that are not pre-tested for biocompatibility in individual patients to ensure the materials are “right for you.”

  An increasing number of medical and dental professionals, ill and recovering patients, medical researchers, and public health professionals now consider these hidden health risks as a major driver of chronic diseases that impact Americans across the age spectrum, as transmission of microorganisms, heavy metals and the like can occur through direct exposure, and prenatally and via breast feeding. Device illnesses for people with genetic susceptibilities include such common FDA approved products as artificial joints, cardiac devices, dental amalgam, Essure contraceptive coils, implants, mesh, and stents. I have personal experience with one of these products, and friends with all of them.

  With the progress of Precision Medicine in recent years, clinicians are discovering the varied causes behind a range of chronic disease diagnoses. These conditions are legion, and include ADHD, allergies, arthritis and Alzheimer’s; chronic fatigue, diabetes, fibromyalgia, and heart disease; gastrointestinal problems, fungal and yeast infections, skin irritation and rashes; Multiple Sclerosis, Parkinson’s, peripheral neuropathy and tremor; and behavioral, cognitive, memory, mobility, mood and mental status challenges. Surprisingly, good clinicians using the principles of functional medicine are able to properly diagnose and “reverse engineer” some of these diseases, when the specific genetic susceptibilities and toxic inflammatory triggers are revealed by genetic and toxic screening.

  It is time for the nation’s health system to catch up. With 21st Century Cures and other bills concerning FDA medical device regulations and taxes in Congress, we have a chance to reboot the system in several ways. There is broad bipartisan and public support from America’s families, who serve as patients, parents, caregivers, relatives and friends to people with a growing number of such health challenges, which tend to multiply as they mature and age.

  It is important to do 21st Century Cures and Device legislation right. Here are some Big Ideas.

   1) Focus attention on common causes of chronic diseases: bad combinations of gene types and toxins outside and within the body, including medical and dental devices. These diseases need remediation and reverse engineering, not lifelong medication. Prompt diagnosis and proper treatment can forestall a future of costly prescriptions for symptom control, joint replacement surgeries, mobility aids, memory care, etc.
  

  • 2) Rebalance federal health priorities, research, surveillance and spending so it focuses on the biggest, most prevalent, easiest-to-resolve health burdens of chronic inflammatory autoimmune and neurological diseases impacting the body and brain. Focus on common, everyday health risks - especially for those with common genetic variants in their methylation and immune pathways - such as mercury, Lyme and co-infections, and mold. These are endemic, and the hidden epidemics of our time.

    3) Medical and Dental Device Safety Urgent Reform (MEDDSURGE) as regulations years out of date and UDIs alone do not go far enough. Patients must get labels, written informed consent for dental fillings, prior biocompatibility screening to determine if a device is "right for you" before installation, entry of all device information into EMRs (not just dental records) seen by one's doctor and big data, and a revised MedWatch Form 3500 with a new section specifically designed for dental device adverse reactions.

    4) Redirect Medical Device Tax to a Victims Medical and Dental Device Illness Compensation (MEDDIC) Fund. Many patients wind up with harm after the fact as we still prescribe devices based on averages rather than individual tolerance vs. toxicity pre-testing. Somebody has to pay for remediation, treatment, recovery, lost income, and high uncovered medical, dental and care expenses patients have incurred.

    While we are promoting 21st Century Cures, it would be wise to end 19th Century dentistry. Nobody is filing patents to perfect amalgam anymore - not even the ADA - only to mitigate its harm. And stop open season on women and men via reproductive system, heart, joint and other implants that are not well tolerated by those with methylation and immune variations. Test for tolerance or toxicity first.

    Call your Representative and thank them for their vote, and Senators Ed Markey and Elizabeth Warren at 202-224-2742 and 202-224-4543, respectively, and ask them to Rebalance Attention to Chronic Diseases and Medical Device Safety, Focus on the Common Causes and Hidden Health Risks for Chronic Diseases, and Reform FDA Regulations for Precision Devices and Safety via MEDDSURGE and the MEDDIC Fund.

    Restore, safeguard and protect the health of Americans for the health and well-being of us all.

    Laura Henze Russell is the Principal of Precision Research & Communications: Precision Health. She was an invitee at the White House Champions of Change Precision Medicine Event July 8th, and also attended the NIH Precision Medicine Advisory Committee Work Group on Patient Engagement and Health Equity July 1-2, 2015. Her summaries of these events are athttps://storify.com/LauraHRussell/nih-precision-medicine-patient-engagement-health-e andhttps://storify.com/LauraHRussell/white-house-champions-of-change-precision-medicine.

  
  

Genome, Toxome, Deviceome: Ultimate Selfies for Health

My comment on the CDC Blog Post, The Ultimate Selfie.

The CDC cautions against overreliance on the genome and the dangers of the "narcissome."  Instead, it should accelerate equal attention to the toxome, the exposome, the dentalome, the deviceome.

Among the early adopters of genomics are those whom mainstream top line medicine failed for years, who got sick and tired of living with inexplicable chronic diseases, and doing the best they could with "medication management" and "chronic disease management." They are discovering new learning, medical practitioners, avenues and approaches to explore, and groups to seek out peers and share experiences, initially in person and increasingly online.

We learn that looking at both sides of the equation, genetics and toxicology together, are the keys to chronic diseases, and that one can remediate bad combinations and restore healthy functioning of the body and brain.  We learn that functional medicine physicians can be more helpful than specialists for various conditions because they see they body as a whole, an integrated symphony and set of systems.  We learn that the lack of attention to biocompatibility in the human body is a  gaping whole in medical practice and regulation of installed devices, as is lack of an integrated approach to body, brain, dental and mental health.

We are working to update regulations that are nearly 50 years out of date in which patients get no labels, no written informed consent, no prior biocompatibility screening for the individual before installation of permanent medical and dental devices (while it is recommended for temporary hair color products), no entry and updating of information on our installed devices such as we get for prescription drugs and OTCs at every doctor visit.

There is a Rosetta Stone of sorts, it is to follow basic engineering principles in the body. If genetic glitches impacts one's ability to methylate and clear everyday toxins, we must be vigilant in screening them and clearing them for health. These can be biotoxins like Lyme throughout its lifecycle and coinfections, chemotoxins, metallotoxins like mercury from fillings and fish, mycotoxins like mold, etc.

Health is a powerful motivator, and reward.  As important as genomics is toxicology. As important as Precision Medicine is Precision Devices, to ensure they are right for us. This is where the easy, quick wins and big payoffs for reducing chronic disease rates begins.

More Should Be Done to Fight Lyme Disease

From the Sharon Advocate

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  • Column: More should be done to fight Lyme disease

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    By Laura Henze Russell/
    Guest Columnist

  Posted May. 7, 2015 at 8:17 AM 

  SHARON
  

  Lyme disease is one of the biggest health scourges of our time. The numbers of patients affected keeps rising skyward with official CDC estimates now at 300,000, or 10 cases for every one officially reported.

  Patients and observers believe many more cases exist than are ever diagnosed, as the walking wounded and mysteriously ill wander among us.
  

  May Day is being organized as a national day of action for Lyme awareness and proper treatment, with advocates in Washington, DC until May 1 to lobby Congress and meet with the CDC to call for better diagnostic and treatment guidelines.

  Our public health system lags badly on all the biggest scourges impacting health. As with other governmental institutions, change is lumpy, episodic and slow. While that is unfortunate in other fields, in health where new threats emerge but their seriousness is not recognized and acted upon, it is dangerous.

  Our public health system is quick to act on exotic, foreign, rare threats, but not on the garden variety, everyday things in our yards, homes and bodies that are making us ill.

  Growing up on Long Island and living in eastern Massachusetts, Lyme is among the three challenges that took down my health and vitality for more than 20 years.

  For others and me with persistent Lyme - a short course of generic doxycycline hyclate and even a longer course, didn't fully work (it did make me nauseous).

  Perhaps Lyme spirochetes have developed resistance, or it only works on some strains and times of the life cycle, or people with different gene glitches need different Rx - all of these questions urgently need research. A short course of doxycycline monohydrate did work.

  Different treatments are needed for different stages of the disease. Why is this knowledge not spreading in the medical community and to the CDC, leaving patients to fight to update their guidelines?

  Regarding tests, it is important to remember this: "In order to cycle between two very different hosts, B. burgdorferi varies its gene expression, leading to different protein components and enabling physiological adaptation to these environments [49–53]. A number of studies have begun to delineate those changes." (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440571). Therefore, "gold standard" PCR tests with narrow interpretations regarding the bands may be correct in identifying a particular stage of a particular strain of Borrelia burgdorferi (Lyme spirochete), but miss related strains of the disease, miss other life cycle stages (e.g. spores), and also miss co-infections, for which too few doctors test.

  The CDC must keep up with new science, diagnostics and effective treatments in this era of precision medicine. The FDA has far to go in protecting people from all kinds of toxics which it lets slip through the regulatory approval process, especially for installed medical and dental devices for which people have varying genetic tolerance and toxicity levels.

  Informed observers - from physicians to researchers to patients - believe Lyme reached truly epidemic proportions. It is worth exploring whether prophylaxis is in order for those at greatest risk, just as one takes prophylactic Rx for malaria when traveling to parts of Africa, Asia, and Central and South America.  

  There is a renewed drive to crack down on anything that deviates from medical orthodoxy. True innovation and advancement comes from disruption, whether in medicine or other fields. These agencies need a reboot on materials safety, and to take a broader view of tests and treatments that are helping hard-to-diagnose but very ill patients recover and get back with their lives, back to their work and paying taxes, and fully back to their families. They need to put patients and health first.

  Laura Henze Russell is the principal of Precision Research, Writing and Communications in         Sharon.
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