I've been doing a lot of investgative work about persistant Lyme disease. Never heard of Persistant Lyme disease? I'm not surprised. It's highly controvercial and covered up by government and medical professionals.
I followed a girl who was basically a potato because of it, and how horrible she was treated by doctors. She was basically tortured by doctors who accused her of making up her illness, having anorexia, etc. I had to tone down my articles a lot because of the controvercial nature of my work, but I storngly ugre people to look into this. Find the documentary, "Under Our Skin." I think this is an issue that may blow up sometime soon.
Here's a draft of an article I wrote with a local twist. If you want to know more, some of the real scary stuff I looked into, I'd be happy to inform you by email.
---
A panelist of Lyme disease educators and scholars attempted to educate the public and debunk myths about the highly controversial disease, at the Hampstead Public Library June 25.
The panel was comprised of Hampstead resident Jacqueline Arlen, whose daughter Victoria suffers from dehabilitating chronic Lyme disease, nurse practitioner Peg Ditulio, who owns a private practice in Atkinson, and Greater Manchester Lyme disease support group leader Dave Hunter, whose children have suffered from chronic Lyme disease.
“There are very few Lyme literate people in New Hampshire,” Ditulio said “It’s a bit like the underground railroad in that you have to practice in the way that’s kind of quiet because the larger powers that be are a threat.”
They explained to an audience of about 30 people, many of whom were concerned they may be facing cases of chronic Lyme disease and were disappointment with the medical treatment they had received, that chronic Lyme Diseaseis not handled correctly by most medical professionals and the best way to get real care is to seek out one of the few Lyme specialists in the area.
“I came into this Lyme world through Jacqueline and Victoria,” Ditulio said. “This situation forced me to really research and look at the issue because Victoria’s situation was nothing like Lyme I had been taught about.”
The panel focused on discussing the problems with mainstream medical institution’s approach to detecting and treating Lyme disease and persistent chronic Lyme disease, which mainstream medicine refuses to acknowledge exists, according to the board.They also answered specific questions about testing, symptoms and various ways to treat the disease.
Many members of the audience were worried the tests they were given to detect Lyme disease were not reliable. The board followed up by saying that there are many factors that could prevent a patient infected with the disease from being detected by blood test. For example, Arlen said, if he or she takes Ibuprofen two weeks before the test, it will come back negative.
Hunter suggested to the audience that if they think they have symptoms, they should take a 200 mg. dose of the drug two times a day, because that 100 mg dose one time a day that doctors usually prescribe is not strong enough to kill all the infection.
One woman in the audience, a practitioner at a mainstream medical facility, said she was infuriated by the ignorance of her practice and the protocol she has to work under.
“As a clinician in mainstream medicine it’s very frustrating and it make me very angry,” she said. “My hands are often tied. If you go to a mainstream facility, it’s very difficult. I don’t even trust the lab I use. I’m very frustrated because I don’t know what to do. I don’t know how to treat these people.”
The woman said her practice, like most practices, uses unreliable tests and assumes the disease is gone from the patient, even if he or she still has symptoms after the usual 30-day treatment.
Lyme disease, a neurological disease that originated in Lyme CT and is transmitted by ticks and mosquitoes, is becoming an increasing threat in Rockingham County, and there’s a growing concern in the medical field about accuracy in identifying and treating the potentially chronic illness.
Another problem that the panel focused on was misconceptions about Lyme Disease symptoms. While conventional wisdom has labeled it as a disease with physical symptoms, it often takes the form of Attention Deficit Disorder (ADD), Multiple Sclerosis (MS), sleeplessness and mood disorders in addition to a wide variety of physical signs including light sensitivity, joint pains, burning sensations and others.
The panel was met with fear and frustration by the audience, and tried to calm their fears by giving informed, accurate ways people can help prevent and treat Lyme disease. They urged people to take matters into their own hands and seek the help they need, rather than depending on medical institutions.
But even if they are educated, not a lot of people have the resources to get help and it is very difficult if you are on tight on monetary funds. The few Lyme doctors that do choose to defy the mainstream and treat persistent cases cannot accept Health insurance and it can be a very expensive process.
“That is what is the crime that I think is frustrating,” Arlen said. “There are not a lot of options. And the problem is Lyme doctors. are booking up. That’s what’s criminal is there are not a lot of options.”
In 2008, Rockingham County had 389 new cases of Lyme disease, an infectious disease originating in Lyme, CT and transmitted through tick and mosquito bites. This is up from 312 in 2007. That’s higher than any other county in the state. The rate per 100,000 people jumped from 106 in 2007 to 131 in 2008. More than 50 percent of the ticks in Rockingham County are infected with Lyme Disease.
The state of New Hampshire has been monitoring the surge for years and has started tick collecting to better assess the areas of the state most impacted, said Dr. Jason Stull, state public health veterinarian.
The NH Department of Health and Human Services (DHHS), which identified Lyme disease symptoms on a two-page fact sheet states, “Often, but not always, people develop a large circular rash around or near the site of the tick bite. Multiple rash sites may also appear. Other symptoms such as chills, fever, headache, fatigue, stiff neck, swollen glands, and muscle and/or joint pain may be present. These may last for several weeks.”
The DHHS fact sheet goes on to state that if Lyme disease is left untreated for a few weeks or months, complications such as meningitis, facial palsy, arthritis, and heart abnormalities may occur and other body systems may be affected.
And while these symptoms are usually avoided with a typical 30-day treatment if Lyme disease infection is identified quickly, some medical professionals are concerned that too many cases in patients who did not get the rash symptom are going undetected and progressing into serious, persistent infections that are difficult to diagnose.
There is a camp of medical professionals who question the federal and state guidelines for detecting and classifying the disease, said Ditulio.
“For those in question of existing practices, the real issue is around the diagnostic criteria for Lyme disease, and that’s where the issue lies,” Ditulio said.
Using the current standard diagnostic criteria, there has been an increase of identified Lyme Disease cases in Rockingham County.
“But those people who consider the diagnostic criteria too restrictive would say the instances of Lyme disease are much higher than reported because the criteria does not cover them,” Ditulio said. “Standard guidelines say 30 days of treatment will take care of acute Lyme disease. What I’m seeing is that part of the guideline is in serious question.”
Ditulio noted that there is a lot of pressure on people who are interpreting the guidelines differently because they risk having people in terms of the insurance industry coming down hard on them. Many of these doctors work behind the scenes.
Most federal policies on the disease are based on information put out by the Infectious Disease Society of America, Hunter said. ISDA represents physicians, scientists and other health care professionals who specialize in infectious diseases, with a purpose to improve the health of individuals, communities, and society by promoting patient care, education, research, public health, and prevention relating to infectious diseases.
Hunter said there is a lot of myth and misinformation about the disease. The Infections Disease Society of America put out guidelines that basically deny the existence of chronic Lyme Disease, he said.
“If you treat it for three to four weeks, you can’t have it anymore, they say,” Hunter said. “It’s total malarkey; science is very clear that this bacteria can survive longer, it can hide out in the body where it can’t be detected. And this influences the majority of establishments for disease control, including the federal government. It gets passed to state health departments and as a result, there is very, very big conflict between what patients know is happening, and what government believes.”
The Infectious Disease Society of America’s facts website on Lyme Disease (http://www.idsociety.org/lymediseasefacts.htm) states that treatment usually involves from 10 to 28 days of oral antibiotics and is highly effective. When Lyme disease is diagnosed and treated quickly, 95 percent of people are cured within a few weeks of treatment,” it states.
The website also mentions that the other 5 percent likely will have continued problems because they never had Lyme disease at all and received the wrong treatment for their illness, they had It says that in rare cases, people who have been diagnosed with Lyme disease and properly treated have lingering symptoms, including pain, joint pain and fatigue.
“However, an extensive review of scientifically rigorous studies and papers available to date has determined that there is no convincing biologic evidence to support a diagnosis of chronic Lyme disease after completion of the recommended treatment,” the website states.
But in 2006, the committee that wrote the current IDSA guidelines on Lyme disease was investigated by Attorney General Richard Blumenthal of Connecticut. Nine of the 14 members of that committee were found to have a significant conflict of interest that tainted they way the wrote the guidelines.
Blumenthal asserted the committee violated antitrust laws, failed to follow its own procedures when appointing members, failed to appoint scientists and doctors with divergent views on chronic Lyme Disease, and refused to meaningfully consider information about Lyme Disease.
“The guidelines the clinicians have been following have been brought into serious question,” Ditulio said, “The committee is being reformed, but honestly, it’s going to take a year or more to put that committee together because there are only so many in the country that meet the very stringent criteria around conflict of interest.
Currently, the guidelines remain the same as they did in 2006.
“This is going to take years,” Ditulio said. “We are looking from four to five years from now.”
At the Panel discussion, Arlen suggested that the medical institution will likely not change until the people speak up.
“My opinion is the change is going to come through the consumer,” she said. “It’s going to take people like yourselves.”
Arlen is working in New Hampshire to get legislation in place this October that would protect consumers from insurance companies that refuse to pay for treatment of persistent Lyme Disease and would prevent the prosecution of medical professionals who practice treatment alternative ot the mainstream ways.
“It’s going to take people like you calling their legislatures and supporting these bills,” Arlen said. “Ultimately it comes to the people…you need to say, ‘it doesn’t matter what you’re telling us, we have no bread.”
But Hunter cautioned against opening up a can of worms by becoming too verbal and visible about the issue. He cautioned against starting a political battlefield. Too much attention on the state could draw out massive opposition that Lyme advocates are not ready for, he said.
“We’re up against hugely powerful enemies and they are enemies, make no mistake about it. We have active opponents,” Hunter said. “What I’ve cautioned people having been on the ground is you don’t know how lucky you are. The more you battle, the more you bring in the national attention. There’s huge, huge politics trying to deny treatment with anything else but antibiotics. Political activism…it can backfire.”
No comments:
Post a Comment