A Heavy Toll From Disease Fuels Suspicion and Anger
Jodi Hilton for The New York Times
Victor Sylvia near one of the abandoned factories in Middleborough, Mass. He believes the area is responsible for cases of disease.



By MICHELE MORGAN BOLTON
Published: October 7, 2007

MIDDLEBOROUGH, Mass., Oct. 6 — The big news in this struggling southeastern Massachusetts community is a proposed $1 billion casino complex that many hope will bring financial salvation.

But for a small group of residents, the hope for economic revival is overshadowed by health concerns. They are awaiting a report later this year that could reveal whether the dozens of cases of Lou Gehrig’s disease centered around a downtown industrial area were caused by pollution.

The cases, which both state and federal officials call a disease cluster, are located within a mile of Everett Square — a densely settled neighborhood adjacent to the town’s onetime factory row. It is now home to two Superfund sites.

The study, which was financed by the federal Agency for Toxic Substances and Disease Registry and conducted by state health scientists, will be followed by the creation of a statewide registry to track cases of the disease, formally known as amyotrophic lateral sclerosis, the cause of which is not fully understood.

State Senator Marian Walsh, a Democrat from West Roxbury, said it was understandable that most residents were more interested in the prospect of obtaining a casino, which would be built by the Mashpee Wampanoag Indians and is expected to create as many as 10,000 jobs.

“It’s human nature that we move toward pleasure and away from pain,” Ms. Walsh said. “But here, if we can understand the genesis, the registry will bring in money, information and resources that will help get to a cure.”

Word about the A.L.S. cluster surprised Scott Ferson, a spokesman for the Mashpee Wampanoag Tribe.

“We didn’t know about it,” Mr. Ferson said, asserting, however, that the revelation was not an issue in choosing to locate the project in the town. Middleborough residents voted to accept the casino in July.

In early September, Gov. Deval Patrick, a Democrat, announced a plan to license three casinos, including one here in southeastern Massachusetts.

Amyotrophic lateral sclerosis is a neurodegenerative disease that destroys the ability to control movement. Patients lose their ability to move or speak, but their minds remain unaffected. It is nearly always fatal, usually within a few years of diagnosis.

Some residents, like Victor and Marion Sylvia, married 57 years, have spent years trying to prove that heavy metals and solvents from plating and shoe factories — and the toxic chemical cocktails of other industries — are to blame for the illnesses here.

Mr. Sylvia, a former town selectman, knew many of the dead and dying. Others seem like friends, though he knows them only on paper. “Our hearts go out to these poor souls,” he said. “There is no cure.”

Now dependent on a cane, Mr. Sylvia conducts much of his activism from the kitchen table, where 40 years of research fans out in yellowing stacks of maps, newspaper clippings and obituaries. He remembers a pivotal moment in winter 1976 that intensified his suspicions about toxins when he drove around a curve near the factories and found a multicolored mess of melting snow and ice.

Offending sites, like the abandoned Middleborough Plating Company and Rockland Industries, a chemical plant, are either already capped or under remediation.

But Mr. Sylvia, a farmer who once grew watercress and mint near waterways he insists are tainted, said it was not enough.

“People are still getting sick — that’s what bothers me more than anything,” he said. “But I’m getting tired. I’m 78 years old. I don’t know if they’ll ever prove that one company caused a problem.”

Town Selectman Wayne Perkins said: “For years, there’s been a fear that something was here creating more of an instance of A.L.S. I’m concerned. I’ve always been concerned. It can’t be undone, but it can be cleaned up.”

Suzanne K. Condon, director of the state’s Center for Environmental Health, said an environmental link may emerge from the report. “About 10 percent of the time we do these types of cluster investigations we tend to see that the environment may have played a role,” she said.

High incidences of breast cancer in some affluent communities may not so much be attributed to a cluster, for example, but rather better screening processes for early detection, she said.

“But with A.L.S., we don’t really have a surveillance system in place,” Ms. Condon said, because there is still no definitive answer to what causes it.

Investigations into such cases are often inconclusive, and what appear to be clusters often cannot be proven to be anything other than coincidence.

Donna Jordan and Mary Ann Singersen were co-founders of the A.L.S. Family Charitable Foundation in Buzzards Bay. Ms. Jordan’s brother, Clifford Jordan Jr., fell ill and died in his 30s, after living and working less than a mile from the plating factory.

Ten years after his death, her pain remains intense.

“I can’t believe they’re worried about a casino,” Ms. Jordan said. “We’re not messing around with something like a cold or a bug here. Here was a dad who rode his bike 20 miles a day. He didn’t drink. He didn’t smoke. And then he couldn’t do anything but wither away.”

There are other stories, Ms. Jordan said, like the owner of a three-family home in the square who died of A.L.S. “Then someone else moved in, and they died from A.L.S.”

“We’ve been screaming about this for years,” Ms. Singersen added. “But for whatever reason, it keeps getting swept under the rug.”

Rick Arrowood, president of the state chapter of the national A.L.S. Association, said few officials had any idea there were so many cases in Middleborough before advocates brought the crisis to the state’s attention.

“What else didn’t they know?” Mr. Arrowood asked. “Unfortunately, it’s all an unknown. We can’t urge people to take steps to avoid something because we don’t know what that unknown is.”

Suzanne Dube lost a cousin to A.L.S. in 2000, after he worked much for of his life as an accountant in Everett Square. In August, an uncle who was a mechanic in the same area also died.

“Until the registry is in place, we are just shooting in the dark,” Ms. Dube said. “We need it. So history doesn’t repeat itself.”

http://www.nytimes.com/2007/10/07/us...=1&oref=slogin

Having been in a wheelchair with oxygen support and loss of swallow reflex. Signs pointing to ALS. The culprit was Lyme Disease. Took 12 years to find. It is time that Yale admits they had patent on Borrelia and it's ability to morph into several stages that are difficult to detect and understand, let alone treat. When IGENEX Lab did my testing, at my expense, the antibodies for Borrelia Borgdurferi, Borrelia Hermsli, Babesia WA1 and Babesia Microti were identified. So many years after the fact in my case!!! When I finally had the testing my long battle for health was at last making sense. When long term IV therapy, with several drugs, was introduced my body became whole and I found me again. I am walking, talking, swallowing and living a life I feel I deserve after being told that my engorged tick, taken from the back of my head in 1989, could not possibly be Lyme tick because "there is no Lyme Disease in Texas." For this reason I was not treated and went through many symptoms and surgeries to include a brain artery rupture. My immune system tried to fight something that the Infectious Disease Doctors would now treat with an oral antibiotic. Back in the 1970's and 1980's many of us were told we did not have Lyme Disease and were not tested. A family member heard the story of a patient that paralleled my symptoms, to include at the time a rash, brain fog, extreme fatigue, vision problems that could not be explained and down the road a few years later - surgeries for tumors of unexplained origin and fast degenerating osteoarthritis that included two shoulder surgeries spinal fusion and brain aneurysm rupture. The patient that paralleled my health had been lucky to have been tested and found to be Lyme Positive. How does the infectious disease community explain this??? How many thousands of other patients will have to suffer at the hands of medical folks that are so sure of themselves that only the tests that back up their dictates, is used. Also, only their medical protocol is the correct one when there are so many unanswered questions and so much cover up. So many patients have been made to live a life of hell. Do you really think that patients want expensive drugs and hours taken out of the day to infuse them? Certainly not! But, to give drugs only for directed time, limits the possibility of living a good life, opposed to that of a helpless sick, disabled human. This disease may never be eradicated, but possibly controlled, that is what concerns patients that are fighting for the chance to live instead of just exist. I applaud the Lyme Literate medical community for admitting that this disease is NOT an easy one to treat and if you don't clear up in a certain time, esp. if not given any medication way back when the possibility of the disease became apparent, that you treat the patient as an individual. Every time I hear the phrase that it is detrimental to have ongoing antibiotic therapy it just galls me. If I had had the amount of time limits you wish to impose I would still be wheelchair bound and be an ALS, Alzheimer patient. Your studies never went long enough to give the patient like myself time to heal so - just maybe you are in the wrong. This is such a firefight. There must be something to long term IV therapy because thousands of people are trying to tell you that they have and are being helped and you have closed your ears and mind to a disease that just may be the most difficult one you have ever come across. Every infectious disease doctor that Tricare referred me to (three) stated that their office did not treat Lyme Disease. What is going on with your specialty area? If it is so easy to treat and we hear the protocols from the President of your Association with such Bravado then why the hesitancy? If venereal herpes is treated with daily Valtrex, an antiviral, maybe Lyme might possibly be treated with a daily antibiotic. I do know that one of my kidney infections took 6 months of antibiotics to clear. So I think you know where many of us are going with this. Your tests were too short to be of any significance with this morphetic, horrific, complicated disease and you just will not admit it. So many doctors were disregarded with their imput and the patient suffering this disease are one up on most of you. Let us work together and find a way to allow patients to live an active life. Some syphilis patients are on antibiotics for the duration of their lives. This disease, from my studies, is much easier to understand and treat than Borrelia because of Borrelia's often involved with a co-infection. Respectfully, Pam R.N.

Disease cluster mystery
October 14, 2007

FOR MORE than 20 years, health officials have known about a puzzling concentration of the neurodegenerative illness known as Lou Gehrig's disease in the southeastern Massachusetts town of Middleborough. In the coming months, a study financed by the federal government and conducted by state environmental health scientists might answer the riddle of whether toxic waste from two Superfund sites in the town has caused the rare and usually fatal disease, which normally strikes just two of 100,000 people.

The state is also working to create a registry to keep track of the disease. In collaboration with the Centers for Disease Control and Prevention's National Environmental Health Tracking Program, such registries can build up the databases that researchers need to track diseases with suspected environmental causes. Democratic Senator Hillary Clinton of New York and Republican Orrin Hatch of Utah have called for a $100 million increase in the CDC program's budget to help the tracking program establish itself nationwide. Congress should approve the funding.

Besides being a potential site for a casino operated by the Mashpee Wampanoag tribe, Middleborough was home to a metal plating plant and a chemical plant. Their industrial waste became Superfund sites that still have not been entirely cleaned up.

The two best-known victims of amyotrophic lateral sclerosis (ALS) have been Gehrig, the baseball Hall of Famer who died of it, and the physicist Stephen Hawking, who has defied the odds by surviving with the disease for decades. Most of those afflicted die within two to four years. The disease deprives patients of the ability to control motion, speech, and finally breathing, although their minds remain clear. Besides environmental factors, scientists are also exploring genes and viruses as possible causes.

Researchers have studied other ALS clusters. Three men who played football for the San Francisco 49ers in 1964 were diagnosed with Lou Gehrig's. A possible cause was a fertilizer with high levels of the heavy metal cadmium that was used on the team's practice field. Residents of the western Pacific island of Guam have also had abnormally high rates of the disease. A possible trigger there was an edible bean, the cycad.

The CDC program for tracking environmental links to diseases was spurred by a 2001 Pew Environmental Health Commission report calling for such an effort. The program offers the prospect of integrating, under uniform data standards, the toxic monitoring and health surveillance efforts of a myriad of state agencies. Especially in the case of low-incidence diseases like Lou Gehrig's, such a nationwide tracking system could be of great benefit to scientists in identifying concentrations and pointing to causes. Congress should give the project the support it needs.

© Copyright 2007 Globe Newspaper Company.
http://www.boston.com/news/globe/edi...uster_mystery/

ALS in our town
Posted Tuesday November 6, 2007 at 01:26 PM EST in Children & Families
I am part of a committee in the town of Middleborough, MA that is trying to get the word out to people that may have lived in this town at one point that now lives with this disease. Years ago there were several manufacturers using chemicals along a two mile stretch of railroad tracks that we believe may link the two together. The companies that used to exist along the tracks used dyes for shoe making and other chemicals used in electroplating and foundries. Over the past few decades there have been an enormous (27) amount of people who have passed away from ALS and we believe this is more than a coincidence. There are also high levels of MS and Cancer along the same path where the town has several streams and drinking wells. We are starting to get national attention and a lot of studies have been done but we need more information to link the diseases together so maybe someday there will be a cure.
If anyone knows somebody who lived in the town of Middleborough from 1960-Today then we would like to know.
Here are some articles that appeared recently in several news groups:

http://www.boston.com/news/local/art...a_on_gehrigs_r aise_flag/

http://www.southcoasttoday.com/apps/...=/20070830/NEW S/708300392/1010/TOWN09

http://www.rideforlife.com/archives/000906.html

Here’s one from the New York Times

http://www.nytimes.com/2007/10/07/us/07middle.html

Wally Glendye
waglendye@yahoo.com