Commentary: CLD – Caustic LD Denier

•December 17, 2014 • 2 Comments

I just came across a dubious Lyme disease article in Forbes, “NY Governor Must Decide Today On Shielding Doctors Who Use Unproven Lyme Disease Treatments”.

Leave it to a business magazine to dogmatically support the interests of financial entities over the wellbeing of the very ill. I’m sure the author of the article, Steven Salzberg, considers himself a reputable investigative journalist, but his opinions on this subject are nothing shy of sycophancy.

To suggest that Chronic Lyme Disease (CLD) does not exist or that patients and doctors are just racking up unnecessary medical expenses, implies that Salzberg’s knowledge of CLD is greater than the collective experiences of the 10’s of thousands afflicted with the disease, as well as the scores of Lyme Literate Doctors (LLD) on the front lines treating the disease every day. Frankly, it is hard for me to take seriously anyone preaching the pros or cons of CLD who hasn’t experienced the disease firsthand.

Personally, having had LD for approximately 16 years and had daily intravenous (IV) antibiotics of Rocephin and Zithromax for about five of those years, I believe the proper level of treatment can only be determined on an Individual basis. In my case, through much trial and error of many varying treatments, and objective self-analysis of my cognitive healing and neuro-muscular changes, my LD induced quadriplegia is gradually on the mend. This certainly would not have been the case based on the medical professional’s denials of CLD nor merely three weeks of Doxycycline.

So, should a financial magazine journalist whose self-interests are clearly aligned with those that profit from misdiagnosing CLD be taken seriously? Obviously, no. Unfortunately for many of Mr. Salzberg’s readers who live comfortably in the LD hotspots of Connecticut and Long Island, his misinformation has put their families and themselves at an even greater risk of contracting the disease.

And as for all those medical professionals racking up my medical expenses by insisting that I have MS – a disease with no known cause nor cure – rather than LD, I say “Hmmm”.


A tick (and antibiotics) in time

Saves Lyme



Willy Burgdorfer, Who Found Bacteria That Cause Lyme Disease, Is Dead at 89

•November 20, 2014 • Leave a Comment

Excerpted from the New York Times: (11/19/2014)

Willy Burgdorfer, a medical entomologist who in 1982 identified the cause of what had been a mysterious affliction, Lyme disease, died on Monday at a hospital in Hamilton, Mont. He was 89.

The cause was complications of Parkinson’s disease, said Tom Schwan, a colleague of Mr. Burgdorfer’s for many years at the Rocky Mountain Laboratories of the National Institute of Allergy and Infectious Diseases in Hamilton.

Lyme disease took its name from the Connecticut area where it first drew attention in the 1970s, including the towns of Lyme, Old Lyme and East Haddam. Scores of people in the area, particularly children, had developed rashes, fevers, swollen joints and sometimes more serious symptoms. Early on, it was called Lyme arthritis. It did not take long for scientists to speculate that there was a common link: blacklegged ticks, also called deer ticks.

Many of the children lived and played in wooded areas and developed rashes after being bitten by deer ticks. Cases were more prevalent east of the Connecticut River, where there were more deer. Many laboratory hours were devoted to determining if the deer ticks were spreading a virus. But no virus was detected. There had to be another explanation.

Dr. Burgdorfer, who was born and educated in Basel, Switzerland, moved to Hamilton in 1951 to pursue his distinctive specialty: tick surgery, as he liked to call his meticulous method of dissecting ticks to study the diseases they spread. Hamilton, a small city in the Bitterroot Valley, had been home to a prominent laboratory for decades, after the discovery in 1906 that wood ticks in the region were transmitting Rocky Mountain spotted fever.

In the early 1980s, Dr. Burgdorfer was analyzing deer ticks from Long Island that were suspected to have caused spotted fever when he stumbled on something unexpected under his microscope: spirochetes, disease-causing bacteria shaped like corkscrews. They were located in only one section of the ticks, the so-called midguts. He had studied spirochetes in graduate school.

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Valley View: Lyme is most misunderstood disease since AIDS

•November 16, 2014 • 1 Comment

Excerpted from PoughkeepsieJournal.COM: (11/09/2014)

With the possible exception of HIV/AIDS, no infectious disease in recent history has been as misunderstood, maligned or politicized as Lyme disease.

After more than two decades of controversy and government neglect, Lyme disease has become too large an issue to ignore any longer. A year ago, the Centers for Disease Control and Prevention reported that only 1 in 10 cases of Lyme disease were properly reported to public health agencies and increased the likely incidence to more than 300,000 new cases of Lyme disease in the U.S. per year. As a highly endemic state, a significant proportion of those cases are in New York.

For perspective, cases of HIV/AIDS number more than 50,000 annually, meaning that for every person diagnosed with HIV/AIDS, there are 6 people with Lyme disease. Ironically, the early years of AIDS were fraught with similar controversy that resulted in the epidemic spiraling out of control, while scientists fought over every aspect of the disease, from admitting that AIDS was actually an infectious disease, to who would get the naming rights for HIV.

There are thousands of people in New York suffering from Lyme disease, a bacterial infection that a few weeks of antibiotics may not cure. As with HIV/AIDS, both the existence of disabling symptoms and the possible cause are under dispute.

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Lyme Disease II: MS and Lyme, Cover-ups and Conspiracies

•October 29, 2014 • 2 Comments

Excerpted from Madison County Courier : OCT-2014)

Ebola continues to fill the news; Lyme disease is finally breaking into it. And the breakthrough brings startling and disheartening news. Because of copyright issues, I can’t quote a piece from the Vaughter Wellness website ( to any extent, but a well-referenced article reports that since 1911, multiple sclerosis has been known to be caused by the same bacterium as Lyme disease.

No wonder there are so many misdiagnoses.

The article takes big pharma, groups like the MS Society, support groups and the government to task for holding back work on Lyme disease. For example, it says big pharma sells symptom relief without significantly searching for prevention and cure protocols or better testing procedures.

Other sources describe doctors being ostracized by their colleagues for successfully treating Lyme disease patients by going beyond the approved protocol – not going out of the scope of modern medicine but beyond what those with power say should be done. Such sources also describe the poor tests used to diagnose Lyme disease (e.g., 50 and more percent failure rates), especially when much better tests are available but not legal or covered by insurance.

Lyme disease is not just a U.S. problem. France produced a video (see called “A Silent Epidemic,” calling the ticks that transmit Lyme “modern vampires.” One Lyme patient describes 20 years of hell, finally capped by 37 medical visits in 10 months when her Lyme disease was finally diagnosed.

Fortunately for her, even after all those years without treatment for Lyme, she made a good recovery. Most people don’t, and Lyme is a long-term, debilitating disease that can even go underground for some time only to arise with a vengeance.

Another article headlines that Canada moves out of denial regarding Lyme. Northern climates were long held too cold for large tick populations. Yet, Canada now has the ticks and Lyme disease, and the hotbed of Lyme disease in the U.S. is Pennsylvania, New York and the New England and Mid-Atlantic states.

Associate Professor of Microbiology Holly Ahern, has boldly said, “Lyme disease is absolutely an epidemic.”

Research indicates it is diagnosed, even among the many misdiagnoses, at a rate of 10 to 50 times what public health statistics show. Estimates are that as many as one million people in the U.S. have Lyme disease. In 2013, a report was published, “Lyme Disease in Massachusetts: A Public Health Crisis.”

It’s starting to be taken seriously, but the previous sentence indicates we still have real problem.

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‘Chronic Lyme Disease’ Debate Reaches US Capitol

•October 9, 2014 • 2 Comments


Excerpted from Healthline: 10/07/2014)

The mainstream Infectious Diseases Society of America says there’s no such thing as ‘chronic Lyme disease,’ but patients with debilitating and mysterious illnesses have come to the nation’s capitol to urge Congress to fund more research.

The debate over chronic illnesses stemming from tick bites has landed on the steps of the U.S. Capitol.

The House of Representatives last month approved legislation introduced by Rep. Chris Gibson (R-N.Y.) that would require the federal government to conduct and support research on Lyme disease and other tick-borne illnesses. The Tick-Borne Disease Research Accountability and Transparency Act of 2014 still needs to pass through the U.S. Senate.

Meanwhile, this weekend, doctors, patients, and Lyme disease advocates will assemble in Washington, D.C., for the 15th annual convention of the International Lyme and Associated Diseases Society (ILADS).

It’s an important time for people suffering from illnesses they believe are related to tick bites. A longstanding feud between the Infectious Diseases Society of America (IDSA) and ILADS is raging with new fervor as more and more people nationwide report debilitating symptoms that last for decades. The IDSA and the U.S. Centers for Disease Control and Prevention (CDC) have created treatment guidelines for Lyme disease based on a number of scientific studies showing that a short course of antibiotics can clear the infection in most people, though several studies mention that one or more subjects experienced “residual symptoms.”

Patients who believe they have chronic Lyme disease don’t accept the answers doctors give them — that their Lyme disease should be gone after a maximum of four weeks of antibiotics, and that any lingering symptoms probably are not related to an ongoing Lyme infection. ‘Chronic Lyme disease’ is not a widely recognized medical diagnosis.

Miserable patients seeking relief, and doctors who have no idea how to help them, have created a culture of extreme mistrust. Patients think most conventional doctors are labeling them as hypochondriacs without making any real effort to help. Most doctors say they can’t help these patients because they do not in fact have chronic Lyme disease. They say other doctors who claim that they can treat chronic Lyme disease are offering false hope, acting unethically, and possibly offering patients treatments that are harmful.

Bill ‘Acknowledges Our Chronic Lyme Sufferers’

Gibson’s legislation calls for basic, epidemiological, translational, and clinical research on Lyme disease and other tick-borne illnesses. It requires biennial progress reports from the National Institutes of Health (NIH).

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Commentary: CDC honesty?

•October 1, 2014 • Leave a Comment


If you search for tenderness
It isn’t hard to find
You can have the love you need to live
But if you look for truthfulness
You might just as well be blind
It always seems to be so hard to give

Honesty is such a lonely word
Everyone is so untrue
Honesty is hardly ever heard
And mostly what I need from you

-Billy Joel

This week, the CDC announced the first case of EBOLA disease in the U.S. The individual had returned to Dallas from Liberia where he evidently contracted it. In true CDC form, the spokespersons from the CDC are placating the public by insisting that the virus is not a cause of concern because the CDC knows how to contain it.

As those infected by Lyme disease (LD) are all too aware, the CDC’s willingness to be transparent and honest about the risk to the public is in itself a cause for concern. After all, it was only until recently that they informed the public that LD can be contracted throughout the lower 48 states, and the number of cases may be 10 times higher than reported due to misdiagnosis. Unfortunately, many doctors are still not on board with these findings and are still telling their patients that LD does not exist in their states.

So then, are we really to believe that all those people that came in contact with this Dallas man before he was quarantined, have not been infected. We can only hope.

The CDC is truly an amazing organization with an incredible number of highly intelligent professionals. But, until they start treating the public with honesty and being forthright, it discredits the entire organization.

Let’s hope some suicidal fundamentalist doesn’t decide to transport their intentionally infected self into an urban area.


Has Climate Change Made Lyme Disease Worse?

•September 23, 2014 • 2 Comments

Excerpted from the Scientific American : (9/22/2014)

Richard Gardiner had no option but to shut down his law practice in Fairfax, Va. in the summer of 2012. A fit 60 year-old, he came down with a high fever and the worst chills he had known in his life. He spent a miserable summer bedridden with aches and debilitating fatigue.

At around the same time in Bozeman, Mont., 12-year-old Noelle Freeburg – described by her mother as a “healthy-as-a-horse” tween who enjoyed dancing, swimming and skiing – became feverish, dizzy, and doubled over with stomach aches every time she tried to exert herself.

In different corners of the United States, this middle-aged man and middle school girl were embarking on the same frustrating, costly journey. It took both of them months to learn why their health was deteriorating. They were patients on the frontiers of North America’s expanding Lyme disease epidemic.

Less than four decades ago, scientists identified a spiral-shaped bacteria transmitted by the bite of a tiny hard-bodied tick as the cause of an arthritis outbreak among children in southern Connecticut. Since then, Lyme disease has emerged from obscurity to become the leading vector-borne disease in the United States. The 27,203 confirmed new cases reported to federal health authorities in 2013 marked nearly a 25 percent jump over the previous year.

While the disease is reported coast-to-coast, it is highly concentrated on the Eastern Seaboard, with a range expanding north into Canada and south through Virginia. Reasons for the spread are not fully understood but include suburbanization and the growth of suitable habitat for the black-legged tick, according to the U.S. Centers for Disease Control and Prevention. CDC believes climate change may be a factor, and this spring the U.S. Environmental Protection Agency added Lyme disease to its list of climate change indicators.

The CDC estimates that the number of infections is likely 10 times higher than reported, nearly 300,000 new cases per year based on lab test data.  Yale University researchers say that 10 percent of the population of southern New England has evidence of a previous Lyme disease infection.

With so much unknown, every aspect of the disease – its spread, diagnosis, and treatment – has become steeped in controversy, with patient advocacy groups often pitted against doctors, the medical insurance industry, and public health authorities. All sides agree that prevention is key, but how to stem the disease is unclear, especially when nature appears to be tipping the balance toward spread of the evasive pathogen, at great cost to health.

“It is so pernicious in its impact on individual lives, particularly children who are undiagnosed and suffer hugely and hauntingly throughout their lives,” said Connecticut Sen. Richard Blumenthal, a Democrat who battled for better treatment guidelines as the state’s attorney general and who is leading a charge for expanded federal funding to address Lyme. “It is life-transforming in a fundamental and profound way.”

Noelle Freeburg began missing school regularly after she took ill in March of her sixth grade year. In seventh grade, she was absent for sickness for 49 days. By eighth grade, she made it to the first day of school, “and that was it,” said her mother, Danielle. “Her day was getting up, eating if she could, and then crawling back into bed.”

Doctors never could determine a cause for her symptoms, which would change often, and sometimes abate. “She had peaks and valleys,” remembers Danielle. “She’d be dizzy with a fever and that would go away in a few days, so we thought it might be viral. Then her knees hurt, and she had severe joint pain.”

One doctor said in a case like Noelle’s, with blood tests showing no underlying problem, the family should look to possible emotional issues. “I get that, but it continued not just during the school year but over summer,” said Danielle. “Stress can explain headaches and a stomachache, but it doesn’t explain a fever.”

The family took her to a holistic health practitioner who asked if Noelle’s Bozeman doctors had considered Lyme disease. “‘We don’t have Lyme disease in this area’ – that was the blanket statement from the pediatricians here,” Danielle said. “No one even asked, ‘Have you traveled?'” In fact, Danielle believes that her daughter was bitten by an infected tick in Montana; she recalls her developing a high fever after a tick bite when she was just 2 years old.

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