Three people, who have shared ideas for months, are on a three-way call, discussing various ways they might help fight Lyme disease, the persecution of Lyme literate physicians, and, of course getting better treatment, earlier diagnosis, and the Yale fraud, too. Then, the conversation turns even more serious, suffering children. But, what could they do for children who were suffering with Lyme disease? They had just heard that Dr. Charles Jones, a renowned Lyme literate pediatrician who treats Lyme disease openly, was on the verge of losing his license. Now where would children go? Lightheartedly, a group's name was thrown out -- MALD (Mothers Against Lyme Disease). The conversation soon ended, but the idea was firmly planted. Why wouldn't a group like this work for Lyme disease? Does it sound far fetched? Sue Vogan, author of NCO: No Compassion Observed, doesn't think so.
Named in 1975, "Lyme disease is the most commonly reported and underreported, vector-borne disease in the United States." The information further states, "the Lyme disease infection in the US is caused by a spirochete called Borrelia (B.) burgdorferi. (A spirochete is a bacteria-like organism with a cylinder-like shape surrounded by an outer membrane.)." - A.D.A.M./American Accreditation Healthcare Commission. It is also an under treated disease, so say experts like Joe Burrascano, MD (Lyme Literate Medical Doctor - LLMD) and Lida H. Mattman, PhD (author of Cell Wall Deficient Forms, 3rd Edition).
The Q-RIBb© or Quantitative Rapid Test For Diagnosing Lyme Disease, was developed by Dr. Jo Anne Whitaker, president of The Bowen Research and Training Institute in Palm Harbor Springs, Florida, and her associates. Although accurate, not only for detecting Lyme disease and co-infections, it is not available for diagnostic purposes. Why? Could it be that if this test were made available, more victims could be treated for Lyme disease and co-infections? Is that such a bad thing? I suggest that it could be.
If a specialist, for arthritis as an example, diagnoses a patient with Lyme disease, wouldn't that mean the specialty business suffers? Wouldn't a patient, who insists on a specialist, be looking for yet another specialist? Perhaps they would be searching for a Lyme disease specialist because their current specialist doesn‘t treat Lyme disease? The pharmaceutical companies, who make drugs for arthritis, would certainly suffer because undoubtedly there would be less need for their arthritis specialty drugs, since Lyme disease is treated with antibiotics, among other medications. And the insurance companies, who are paying for the arthritis treatment, surely would suffer because treating arthritic fingers, for example, is obviously less than treating chronic Lyme disease on a monthly basis. According to a Red Orbit News article by Wendy M. Fontaine, dated November 19, 2005, The Low-Cost Remedy Prescription for Help: Indigent Drug Programs, "...93-year-old Ila Peters, a sharp-witted lady who is partially blind and has arthritis in her fingers. ...Normally, her pills would costs $363.00 for a 30-day supply..." Lyme disease, multi-symptomatic and difficult to cure, treatment with antibiotic alone is still less expensive.
Dr. Jo Anne Whitaker’s most common diseases and conditions connected to Lyme disease list is extensive. The inventory includes Alzheimer's Disease, ALS - Lou Gehrig's Disease, Bell's Palsy, Chronic Fatigue Syndrome, Fibromyalgia, Irritable Bowel Syndrome, Lupus, Multiple Sclerosis, Parkinson's Disease, Syphilis, Scleroderma, and Rheumatoid Arthritis. In addition to these, Dr. Whitaker states, "all rheumatological diseases and many connective tissue diseases may be Lyme-related." Could that be why so many victims are misdiagnosed or missed completely? Is this why the disease is underreported and under treated? Is this the reason that victims often are diagnosed with multiple ailments instead of Lyme disease? Wouldn't the symptoms from these multiple maladies, treated by many drugs, need various specialists, numerous hospital visits and surgeries? Doesn't this all line the pockets of hospitals, surgeons, physicians, pharmaceutical companies - even charity organizations who may prey on the sick for donations? If Lyme disease were the diagnosis, treated simply with antibiotics, would this not cut millions of revenue dollars?
Melissa St. James, her husband, and their children have Lyme disease, but only after being diagnosed first with Multiple Sclerosis, according to Christine Paluf's August 28, 2005 article appearing in The Herald Press. And Kriste, only 14-years-old, knows the Lyme disease medication she is taking by heart, per Bella English's column on June 1, 2005, The Boston Globe. One can only imagine the medical misery these victims went through or the dollar amount spent just to find out that Lyme disease could have been clinically diagnosed on the first visit.
Sue Vogan cannot imagine children having to suffer with the disease she has lived with since being diagnosed in 1997. If she hasn't heard most of the horror stories, she has lived them. Sue's not alone. Everyday, there are thousands who are hearing everything from it's all in your head to your chronic Lyme disease is cured. Sue understands what it is like to watch a child suffer or to lose a child to a disease. Her daughter-in-law, 28-year-old-Kari, succumbed to cancer over three years ago. Sue's granddaughter, Courtney Rose, is motherless and pain from the loss lingers. Kari is still sorely missed. Wouldn't you miss your child, grandchild or another family member if they were gone? What if you could do something about it? Would you?
Sue thought about Candy Lightner, who in 1980, with a group of mothers, got fed up. Mothers Against Drunk Drivers (MADD) was born out of a need to take action. To date, they have over 600 chapters and are making a big impact in their battle against drunk drivers who take lives. Isn't Lyme disease taking innocent lives? Sure it is. There are heartbreaking stories of children everywhere who cannot function because of Lyme disease. Has anyone died because of Lyme disease? You bet they have. Ray Hartmann, Riverfront Times, January 12, 2000, writes a tragic story about Sarah's mother, Makia, who died from Lyme disease, leaving her daughter without a mother; Tom and Karen Forschner, founders of The Lyme Disease Foundation, lost their son, Jamie, to Lyme disease; and the list goes on.
In a December 2005 article written by Marjorie Tietjen, "Lyme Disease and many coexisting infections are beginning to affect everyone...whether directly or indirectly. These infections are intentionally being allowed to spread. Government agencies and universities, Yale being one of the main culprits, are blocking the appropriate care of those diagnosed with chronic Lyme. Curative treatment is also being withheld from those who have been misdiagnosed with other chronic conditions or autoimmune illnesses. The public's attention is being diverted from this already existing pandemic, while the authorities are feverishly promoting the fear of acute exotic flu-like illnesses whose effect on society so far is nil and cannot even be compared to Lyme disease and it's co-infections. The disease complex known as Lyme disease is having a devastating widespread impact on our country and the world."
If it worked for MADD, why not for this debilitating and deadly pandemic infection that is taking lives all over our world? If we can get mothers to join together, get organized to fight for diagnosis, treatment and insurance coverage, it would be a start at saving the children who are suffering from this cruel disease. The government listens to MADD, why not MALD? Do we deserve anything less than appropriate healthcare for our children? Can we stand idly by while doctors are being persecuted for treating our young Lyme disease victims? When, if not now, will we stop allowing our children to suffer and die from Lyme disease?
This is not flu or a common cold -- and it's not going away. Lyme disease is second only to HIV/AIDS; presents with symptoms that only a Lyme Literate Medical Doctor (LLMD) can recognize and treat; and current testing is plagued by inaccuracy (insensitive resulting in false negatives/positives). Grants are awarded, but very little research information has been useful with regards to diagnosing and treating; the government downplays the disease, therefore making the treatment protocols controversial; and even though the Center for Disease Control (CDC) has clearly stated that lab testing is only for statistical purpose, victims have been overlooked because the results from the insensitive testing available has returned a negative result or never tested at all because they do not present with the EM rash.
Physicians take an oath at the start of their medical careers. Only the caring have taken that oath seriously and fewer yet are going one step further by treating Lyme disease - the disease the government, for whatever reason, doesn't want investigated and cured. It's time to stop going after the LLMDs, the heroes who treat against the grain to save lives. At the same time, the government needs to start helping us instead of allowing us to be hurt by underreporting, under treating, and ignorance or obstinacy in the medical community.
The media has covered this disease far and wide. However, the media cannot truly know the pain and agony associated with Lyme disease. Abstracts have come out of NIH and other agencies, but the authors cannot appreciate the victims who have lost everything in search of diagnosis, treatment and insurance payments. There’s even a $20,000.00 reward being offered by the Hartford Lyme disease support group to anyone who can prove without doubt, that the Lyme disease organism, in all its forms, can be totally eradicated within 21-days. I spoke to Randy Sykes, the group’s point of contact. He stated that it’s ridiculous to think that Lyme disease can be cured by the standard protocol currently being used that they just had to offer a reward. To date, no takers. Does it mean that no one can prove this, thereby proving the 21-day "cure" is a farce? Organizations and associations have been formed to further the Lyme disease cause, but the conferences and newsletters haven't been able to make the impact that a group of mothers, like those with MADD, can make.
There is no one that can get more done than a group of mothers. Add in their sick children and you have the strength and determination of an army. I am calling on all mothers to come together to demand better education for our physicians, insist that more reliable testing be made available, earlier clinical diagnosis, long-term treatment, and complete insurance coverage. If Cindy Lightner and her group can do it, so can we! The time is now; the way is clear; and the results, an end to children suffering with Lyme disease.