Lyme Sufferers Must Use The Disease To Make A Difference - 27 East

Arts & Living

Arts & Living / 1338540

Lyme Sufferers Must Use The Disease To Make A Difference

icon 1 Photo

author on Sep 2, 2016

In my years as a journalist, I have found that if you want to find your way to the source of a problem you follow the money. That is not true in all cases, but in politics and war, in my experience it has been so. The problem at the center of the Lyme disease debate has been whether or not chronic Lyme disease exists, and if so how can it be treated.

There are two organizations with worldwide influence that would like you to believe that there is no such thing as chronic Lyme disease. They are the Centers for Disease Control and Prevention (CDC) and the Infectious Diseases Society of America (IDSA).

When the producer of the documentary “Under Our Skin,” a brilliant look at Lyme disease, filed a Freedom of Information Act request for certain documents from the CDC, it took the CDC five and a half years to comply. It should have taken several weeks. Then, once the documents arrived, they were all censored and therefore none of the information requested was delivered. Even a blind man would say there was something wrong with this picture.

The conclusion of the team of television producers behind “Under Our Skin” was that the CDC and the IDSA’a Lyme guideline authors had been in collusion for years. How else to explain that the money goes to those who have a bias against chronic Lyme disease?

Money goes to the development of vaccines and tests. Vaccines are patentable with a market value of approximately $41 billion. Many IDSA Lyme guideline members are paid consultants or patent holders and are related to a new Lyme vaccine. It would seem that both members of the CDC as well as the IDSA also have patents for diagnostic testing as well as vaccines. They have publicly denied they have those patents.

More frighteningly, these powerful organizations have demonstrated that they have long tentacles. Dr. Morten Laane, a doctor/researcher in Norway developed an accurate Lyme test using the patient’s blood, a little water and salt. The combination of the three makes the borreliosis available by looking under a microscope. Had the test gone international, a patient would be able to have a diagnosis in minutes in the comfort of his doctor’s office. Instead, the medical professors at the university where Dr. Laane’s work was being done complained about his work. Shortly thereafter, he received orders to immediately stop all work on the Lyme test. Dr Laane claimed that had never before happened in Norway.

That is not the only case of this kind. Advanced Labs, an American laboratory, created a test in which they managed to grow an actual spirochete from a culture. That kind of test is supposed to be the gold standard of testing.

The same members of the CDC that had denied having patents proceeded to write a clinical paper in which they claimed that all 70 cultures in the Advanced Labs clinical trials were contaminated. The authors of course, held patents themselves.

The same approach was taken when researchers announced that Lyme disease could be transmitted sexually and could be passed on to an unborn child in-vitro.

The truth is if Lyme disease were indeed cured by the use of antibiotics, then a vaccine would not be necessary. And official word that Lyme could be transmitted sexually would limit the number of vaccines that could be sold. By restricting the definition of Lyme disease, it is easier to get a vaccine approved. But with recent proof that a bite from a black legged tick, as well as a Lone Star tick, is not only loaded with Lyme disease, it is also loaded with other tick-borne diseases, the vaccine will have limited efficacy.

There are four tests today used by the medical community to diagnose Lyme disease: The Elisa test, which checks for antibodies to B.burgdorferi; the Western Blot, which is used to confirm a positive on the Elisa test, both of which are inconclusive; PCR or polymerase chain reaction for antigen detection where a piece of DNA is amplified; and finally, culture testing where they look for bacteria rather than an immune response.

According to recent research at Columbia University, antibiotics do not kill spirochetes. Spirochetes move so quickly and with such force, that they can outrun a white blood cell and then evade it entirely by corkscrewing down and disappearing into organ tissue.

Despite what most doctors believe, there are conclusive tests available. When Dr. Joseph J. Burrascano, a doctor on the forefront of Lyme disease treatment, left his practice in the Hamptons, he was hired by a biotech company. That company is working to develop a high value blood and culture test. Both he and Dr. Alan MacDonald, a pathologist, have seen that Lyme disease and its co-infections cohabitate inside protective biofilms where antibiotics and white blood cells cannot reach them. Samples of skin tissue taken from individuals whose blood showed biofilms, show the same antibiotic resistant biofilm in the skin sample.

Researchers at the Envita Wellness Center in Arizona have elaborate testing for Lyme and it’s co-infections. They claim that Lyme spirochetes get together with co-infections and create larger interconnected cells that create an impenetrable protective film around themselves. Within this protective cell they inter-communicate. They believe that if you can eradicate the entire contents of the cell, then you can begin to heal. In other words, all the infections must be treated simultaneously. Envita claims to have found a cure.

According to Dr. Lorraine Johnson, there are more people with Lyme disease worldwide then there are people with AIDS and breast cancer combined. And yet, the IDSA guidelines, which were created in 2007, are being used to restrict diagnosis and have insurance companies deny treatment. For anyone suffering from chronic Lyme disease, they know that medical insurance will not pay for treatment.

Depending upon the state, doctors who follow a road less traveled are shut down. But for those doctors who refuse to give in to pressure and the debilitating effects of constant legal battles costing millions of dollars in legal fees, they continue to speak out.

I know there are many who will find my research hard to believe, because it brings into question the ethics of the all the members of the CDC and IDSA. So I will inject a personal anecdote.

When I was 16 years old, I lived in New York City. It was 1967, and my mother, who worked at Mount Sinai Hospital, was part of a team of researchers overseen by the head of pathology, who was working on a study to determine whether or not “the pill” caused cancer. The head pathologist had received a grant from the American Medical Association to research “the pill.” It was already on the market in various forms and at the time was playing a major role in the feminist movement.

One evening at dinner, my mother seemed unusually irritable. She turned to me and said, “You’re not on the pill are you? If you are, I want you to get off it immediately!” She was extremely upset. I reassured her that I was not on the pill. “Are you sure?”

She considered what she was going to say next and then said: “All the women in our study were on the pill. After three months, the pap smears were coming back positive (meaning positive for cancer). When we were sure that the pill caused cancer, we reported the results of our findings. We were certain this would be amazingly important news. Instead, the AMA withdrew its funding and has put the pill we were testing on the market. So please, if you have even considered taking the pill, don’t.”

I was shocked. Everyone I knew was on the pill. There was a sexual revolution because of the pill. Not only would the pharmaceutical company make money off the sale of the pill, it would then make money off the treatment of the cancer. It was the worst conspiracy theory I had ever heard. Not to mention the misogynistic tone of the entire enterprise. And if I hadn’t heard it from an insider, who happened to be my mother, I never would have believed it.

But that appears to be the way of the world we have created.

Now in 2016, we have choices we did not have in 1967. Information is readily available, and along with information, support groups. We talk to one another. If your doctor doesn’t believe you, find a doctor who does. There is help out there, even if there isn’t help in your immediate community.

And as long as we stay connected and honest, there will be solutions. If you have a dream, keep it in the forefront of your mind. Know that you will make it happen, but know that like an expedition to the Arctic, it may be a difficult journey.

If the CDC and IDSA treat us like we don’t count, so what? We all count more than they’d like to think. And regardless of what others may or may not do or say, it is important to focus on your own healing, finding your own path to health. And when you start to feel better, then focus on helping to heal everyone else. Use Lyme to make a difference.

You May Also Like:

Tennessee Walt Returns To East Hampton Library August 7

Among the less-noteworthy casualties of the coronavirus lockdown of 2020 was country singer Tennessee Walt’s ... 3 Aug 2021 by Staff Writer

‘Music on the Green’ Mondays In Montauk

August 9: Black & Sparrow, with Cliff Black and John Sparrow – 6 p.m. August 16: The Dogwatchers – 6 p.m. August 23: Joe Delia and the Thieves – 6 p.m. August 30: Ray Red – 6 p.m. Music also at Montauk’s Gosman’s Dock on select Sundays at 6 p.m. August 8: Zanti Misfits August 22: The Nancy Atlas Project Bring blankets and lawn chairs. Visit for details. by Staff Writer

The Lions Are Coming: Inaugural ‘U.S. Tusk Lion Trail’ To Unleash Pride Across East End

Earlier this summer, Deborra-Lee Furness welcomed a new guest into her East Hampton home with ... by Michelle Trauring

Eric Fischl Talks about ‘Road Rage’ At The Church

On Sunday, August 8, at 11 a.m. The Church artist residency, exhibition space and creative ... by Staff Writer

A Pair Of Painters At Keyes Gallery

“Broken Arrow,” an exhibition of paintings by Erika Ranee and Melinda Hackett, goes on view ... by Staff Writer

Midsummer Weekend: Three Events, Three Days To Benefit The Parrish

From Friday, August 13, through Sunday, August 15, the Parrish Art Museum in Water Mill ... by Staff Writer

Leonard Bernstein And Israel

“Leonard Bernstein and the Israel Philharmonic” is a film starring playwright, actor and pianist Hershey Felder as the maestro himself. Commissioned by American Friends of the Israel Philharmonic (AFIPO), the film traces Bernstein’s lifetime commitment to Israel’s social causes and includes iconic moments such as the concert after the Six-Day War when Bernstein conducted the Israel Philharmonic in Hatikvah at the newly liberated Western Wall. On Thursday, August 12, at 7 p.m., AFIPO and the Jewish Center of the Hamptons will screen “Leonard Bernstein and the Israel Philharmonic.” The Jewish Center is at 44 Woods Lane, East Hampton. Admission is ... by Staff Writer

Bay Street Bring Embraces The Great Outdoors With ‘Camelot’

Since March 2020, members of virtually every profession around the globe have had to figure ... by Annette Hinkle

A Celebration of A Senegalese Filmmaker

Sag Harbor Cinema is collaborating with the Bridgehampton Child Care & Recreational Center (BHCCRC) and ... by Staff Writer

Get Thee To Camp Shakespeare

Camp Shakespeare returns for its 22nd summer and will run one and two-week sessions from August 9 to 13 and 16 to 20. The camp takes place on the expansive grounds of St. Michael’s Lutheran Church in central Amagansett. Presented since 1999 by the Hamptons Shakespeare Festival, a nonprofit organization, Camp Shakespeare is a fun and creative program for kids and teens, ages 8 to 15. Activities involve acting, theater games, improvisation, movement, voice, and theatrical arts and crafts led by trained theater educators in an atmosphere of discovery and cooperation. Each weeklong session culminates in a performance for family ... by Staff Writer

Welcome to our new website!

To see what’s new, click “Start the Tour” to take a tour.

We welcome your feedback. Please click the
“contact/advertise” link in the menu bar to email us.

Start the Tour
Landscape view not supported
Send this to a friend