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  #31  
Old January 19th, 2012, 12:20 AM
Digger Digger is offline
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Alert, thank you for that post. Just so everyone understands, the onset is different and much more pronounced and extended than the symptoms described in some of the documented mass hysteria cases.

The onset for my nephew occurred during late August to early September. The presentation just prior to onset was a slight lack of concentration and a slight measure of long term memory loss. The day of onset was a sudden lack of control of motor functions, deteriorated cognition and awareness. To the point my nephew could not get up. He was shaking and could not stop. His father and mother had to literally pick him up to take him to the hospital. During the early hours and days following the onset, his whole left side of his body was shaking and twitching indiscriminately. More pronounced was a twitching in his facial muscles on the left side of the face to the point of contorting. He was experiencing incredible neck pains.

Keep in mind for these early days after onset, he was most of the time unable to walk without help due to the shaking and numbness. During this whole time in the hospital (I believe it was about 10-13 days), he was going through a whole list of scans, bio testing, and psychological testing. This was very hard on the family. Not just my nephew and his mother and father but also, the rest of us and friends that could not believe what we were seeing happen to him. This is what makes it so hard for these LeRoy parents. Just like the LeRoy students, one day your child is just fine. Active, no problems, no health issues and the next day you are in the hospital with your child trying to cope and find a way to deal with what is going on. Having absolutely no clue what to do for them. Every test that was performed on my nephew came back negative. Each time a sigh of relief and yet a feeling of anxiety understanding that there still was "NO ANSWER".

My nephew left the 2nd hospital after about 2 weeks after onset in a wheel chair. They sent him home with a walker. He remained at home and did improve ever so slightly each day. During this time, he still was experience random bouts of long term memory loss. It would go away for a period of time and then he would have a relapse. It was like his long term memory would keep resetting. He would only be able to remember events back to the last episode. Each time, he would have to be re-educated on who certain individuals were and what his previous relationship was to them.

Around late October, he began attending school on a part time basis only just a few hours a day. The school provided a tutor. He especially was having problems remembering how to perform math problems. Over the course of a few more weeks his motor dysfunctions and twitching subsided to the point where he was prior to onset.

But the memory relapse events still occurred. The last one that I was aware of was just prior to the family thanksgiving. He actually did not remember most of the family members there!

Since early to mid December he has slowly returned a semi-normal life.

His friend, the other local "Northern Indiana" cases has not faired so well. Her onset occurred just a week or so prior to my nephew. (Note: My nephew was not aware of her illness or status until he was already hospitalized for a number of days.) She is still at home and has had a horrible time with this "mystery illness". (LeRoy's Syndrome?). I do not have enough direct information to comment on her condition from onset till now but I do know she has been out of school since onset in late August. I believe her memory lapses are still continuing. She also had motor issues but the memory issues were more pronounced than in my nephew's case.

Please keep this in mind when posting or researching. This is why I have been following this story so closely. The family felt so helpless and alone in not understanding why this was only my nephew. It helped immensely when they found out about the other girl at his school who was also afflicted.

It helped absolutely incredibly just seeing Emily's post here in late November about the kids in LeRoy.

I am sure if you could sit down and talk with these LeRoy families this story would be told again, and again, and again....

This is why I CRINGE at the mass hysteria diagnosis. I don't believe there was a "mob" tweet about faking tourettes on the internet. Remember, many of these kids, for a short period of time, had no clue that other classmates and friends were also afflicted. The Indiana group included.
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  #32  
Old January 19th, 2012, 12:41 AM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

One of the main lessons from the China incident is not to aggregate cases; that is just because two individuals with unknown illnesses have vaguely similar presentations does not mean they have the same illness, even if they may have had some common exposures or contacts. The attempt to find a single diagnosis for the dozens or hundreds of cases in the China outbreak resulted only in diagnoses of mass hysteria or "unknown virus". Only when the cases were examined individually did most of the cases get diagnosed.

A wide variety of diagnoses might explain an illness such as this, ranging from infections, to toxins, to autoimmune conditions, to genetic disorders, to things that I can't even think of. The nature of reporting in an outbreak such as this will not allow us to speculate as to an etiology; if the doctors examining the patients themselves can't diagnose the illness, as bloggers reading the articles, we have no shot as well. As long as the patients remain ill, we have to view this as undiagnosed.

I hope for the rapid diagnosis and recovery of your family members, as well as the teens in Indiana and New York.
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  #33  
Old January 19th, 2012, 12:54 AM
Digger Digger is offline
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

I would also like to add to my post above....

This is a summary of events. I feel I may have minimized a bit on my previous post. I can't begin to tell about the details about the time off work for both his mother and father. The many miles traveled to see specialists and nuerologists...the stress of having to make decisions on "what to do next" in the midst of doctors and specialists shrugging their shoulders at the end of each examination.

Not to mention the pile of doctor bills and copays left to pay after having at least a partial loss of income during the course of this.

I would like to say "Kudos to Jim Dupont, Beth Miller and more importantly ALL the kids(more like young adults) and their families that were brave enough to come forward and bring this to light"

Thank You So Much from Indiana

You are heros. I believe at this point we have no idea how many "isolated" families you have helped by doing what you did.
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  #34  
Old January 19th, 2012, 08:02 AM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

There is probably no new information in these articles, though the videos show how symptoms are strong enough in some cases to interfere with living.

So far all the environmental testing seems to be of the school environment. One girl mentions having been active in art as a personal hobby, and arts and crafts can involve exposures to many chemicals. Like Alert said, clusters might not be all the same illness or at least caused by the same triggers. One article said some of the parents will form a support group, so maybe they'll discover a common trigger in some of the cases that way.

At least the doctors are saying that the girls will get better.

http://rochester.ynn.com/content/top...er--speak-out/
Updated 01/18/2012 10:00 PM
Two Le Roy Girls With 'Conversion Disorder' Speak Out
By: Kate McGowan


http://www.democratandchronicle.com/...-teens-illness
Results of tests in Le Roy released after outcry over teens' illness
4:35 AM, Jan. 18, 2012
__________________
“I understood how a man who has nothing left in this world still may know bliss, be it only for a brief moment, in the contemplation of his beloved.”
― Viktor E. Frankl, Man's Search for Meaning


(My posts are not intended as advice or professional assessments of any kind.)
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  #35  
Old January 19th, 2012, 05:01 PM
Anne Anne is online now
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Digger, is it same ?

http://www.youtube.com/watch?v=DSl62...eature=related
http://www.youtube.com/watch?v=H5oHz...eature=related
http://www.youtube.com/watch?v=6DQk7...eature=related
http://www.youtube.com/watch?v=fM4vF...eature=related
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  #36  
Old January 19th, 2012, 06:21 PM
Digger Digger is offline
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Anne,

Thanks for sharing the videos. I just want to re-state. My nephew, prior to the onset of LeRoy's Mystery Illness, had no tics whatsoever.

After the onset, the tics were mostly all motor issues on the left side of his body. The prominent areas were his leg and facial muscles twitching at random. At onset the frequency of the tic ing or twitching was very pronounced to the point he was unable to walk. Again, this was accompanied by a numbness in his leg that made it difficult to determine contact with a surface and position. Over the course of his illness, the intensity and frequency of the twitching ever so slightly decreased.

Again, this was from late August 2011 up to around December 1, 2011. By early December most of his motor function had returned to normal and, if any at all, the twitching had stopped. Just like the children in the videos state, he was unable to control this. After a handful of days in the hospital with this at its worse, he began to become frustrated by this fact and agitated about it. I say this, as rightly so, understanding that anyone in this state would be agitated. I have a new appreciation and understanding for those individuals both children and adults that live with tourettes.

Again, all the above was with medication interventions. I can't imagine without any treatment of this type, what it might have been like for him. I do not specifically know if he is still taking medication for the motor issues but do know, at least for now, he is doing much better.

That is one thing I noticed in the stories both here with the 2 Indiana cases and the stories told by the LeRoy parents and children, some do appear to return to near normal over a period of time, while with others the symptoms continue in a recovery/relapse cycle that either maintains or degrades their condition over time.

The issue that causes anxiety even in those that have fully recovered or improved over time is the fact that they still don't know what caused this to happen, if it was appropriately treated, and WILL IT HAPPEN AGAIN?

I believe in the current light that is shinning brightly on this illness, it is imperative to persevere to find out what the root cause(s) of this illness is(are). For this to continue in this manner, even in intermittence, is not acceptable. Too many lives are interrupted or worse yet changed forever because of this. At least parents need some type of support community for this illness that relates to the sudden onset in otherwise healthy kids.

Even without a determination of a root cause of the illness, that alone would help in letting the parents of future victims of the illness know....

1. This has happened before. You are not alone.
2. Direct communicated support from Parents who have been through this before.
3. Known time critical interventions to improve the possible outcome of the illness.
4. Establish an OPEN communication among victims and families to share information that may help in determining what the root cause(s) is(are).

Believe me, when this happens in your family your perspective changes instantly. Just having #1 and #2 would have been a big help during the days of onset.

I know this is a lot but this was very frustrating for the parents being isolated from others that were going through the same thing at the same time.

Last edited by Digger; January 19th, 2012 at 07:39 PM. Reason: Spelling of the word too was incorrect - Also removed reference to "LeRoy's Syndrome" due to a pre-existing nominclature
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  #37  
Old January 20th, 2012, 02:02 AM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Emily,

Just a few minutes ago I clicked on your link(post #34) to the YNN article about Thera Sanchez (link reposted below).

http://rochester.ynn.com/content/top...er--speak-out/

Short of the verbal outburst. This is extremely close to (almost exactly) the story of what happened with my nephew. This is why this cannot be conversion disorder of the mass hysteria type.

Based on the fact that our community is over 400 miles from LeRoy and that these cases in one single town in Indiana occurred without knowledge of the LeRoy cases for over two months after the onset here in our community, the Mass Hysteria diagnosis just cannot be correct.

I understand that stress can cause manifestations similar to what we are seeing here but I would not put all my chips down on the conversion disorder via stress as being the probable cause in this particular illness.

I certainly fully understand why the LeRoy parents feel the way they do about the conversion order diagnosis. It is not denial that they can't accept this diagnosis, it is because everything they know, the nitty gritty details, doesn't fit that. My brother also feels the same. He has been so frustrated and at times very angry with the diagnosis of coversion disorder, even moreso, that "Mass Hysteria" diagnosis the mainstream picked up on. I agree with him and the LeRoy parents.

It takes experiencing this first hand to understand why these parents feel this way.

Either way, thanks for that post. I apologize I didn't get to see it earlier when I got back on I had seen Anne's post and went to those video links.

Last edited by Digger; January 20th, 2012 at 02:04 AM. Reason: added "in one town" in Indiana
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  #38  
Old January 20th, 2012, 12:00 PM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Hello Flutrackers.
First off, I need to introduce myself. I am "Digger"'s brother, the father of his nephew that he has been discussing on this thread. I want to give Digger a special "Thank You" for watching this story so closely, and updating me with the news that he obtains.

The most upsetting thing for me to see in the NY cases, is the Conversion Disorder diagnosis. I understand what Conversion Disorder is, and accept it as a diagnosis for individuals who actually have it. What my son's case, and his classmate's case is lacking in, as to the Conversion Disorder diagnosis, is the stress in their lives that would cause it. Both kids here were normal, healthy teens, without ANY major life-changing events that would spiral them into these symptoms.
My son's mother and I were told by THREE different psychologists, who had all spoken with him, his mother, and I, that he DID NOT have conversion disorder, and that we should NOT accept is as a diagnosis. Within hours of hearing this, the doctor in charge at the time, did just that. When we told him about the psych's statement, his reply was that he would have to re-check his records. He never did clarify the statement.
I understand, and would accept, the simple statement that this is a newly discovered illness, without a name, that is being investigated further, but this is not the case. The doctors in Indiana have simply shrugged their shoulders, after running all 'known' testing, and are simply giving-up.
At this date, my son is 99% the teenager he was before the on-set of his symptoms on Labor Day weekend of last year. His classmate has not yet returned to school.
Being as careful as I can about HIPPA info, I will state the following about the classmate. She is a female, the same age as my son. They shared one class together, and were both in marching band.
Months back, I attempted to get the local health department involved. They declined, stating that without a doctor's diagnosis of something "environmentally caused", they could not get involved. After seeing how The New York Board of Health handled the situation there, I can see it was wasted time on my efforts.
The similarities between NY and here are to much to label as unrelated. My son's tics were confined to the left side of his body, just as the girls I've seen from NY. While my son did NOT have the vocalizations from his tics that these girls are showing, it was sometimes difficult for him to speak, as his entire left cheek would spasm so much that his eye would go closed. His tics were so pronounced, that he was unable to walk, as his left leg and left arm were uncontrollable to him. The first night of the onset, he was showing such seizure-like symptoms, that he could not even sit on the floor. His leg was bruised from the repetitive motion of hitting the floor of the house. His tremors continued through his sleep the first night, but with enough medications, they stopped only while he was sleeping thereafter.

I feel so terrible for the families in NY, as I remember weeks in the hospital, sleeping by my son's bed, praying for answers. I understand each and every frustration that they are experiencing as they go through test, after test, trying medication, after medication, trying ANYTHING to help their child.
I also am very proud of the girls who have allowed themselves to be filmed while their tics are active. These kids know that their bodies are moving uncontrollably. They know that their bodies are producing vocal grunts. I am proud of them for putting the obvious embarrassment aside, to show the world what they are going through.

I have, just this morning, emailed a local news station with my son's story, in hoping to get the word out that this Mystery Illness is not localized in New York. I await a reply.....
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  #39  
Old January 20th, 2012, 04:19 PM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

One Additional Case Reported in Corinth, NY.

One more girl, age 17 from Corinth.

Per WYNT News 13 Albany, NY,

"CORINTH - Lori Brownell can barely let her father get a word in. Not because she's a gabby teenage girl, but physically this 17-year-old can't control the verbal and motor tics that have overtaken her body......"

""From what we're going through now it happened overnight. It went from passing out to this overnight," said her father, Jeff Brownell.

Before July, Lori was a scholar athlete. Her parents say she was the top of her class and a champion field hockey player.

Now the junior hasn't been well enough for school since October."

http://wnyt.com/article/stories/S2460852.shtml?cat=300

Although, there was a sports injury prior to onset, based on the account in the article, this occurred during the same time frame as the Indiana and New York Cases.
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  #40  
Old January 20th, 2012, 06:19 PM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

The above article actually contains the text:

Neither are all the families who describe almost identical problems in Le Roy, N.Y., out in the western part of the state. Lori did eat at a restaurant in Le Roy this summer on her way to a sporting event, but her mom and dad believe it's a bizarre coincidence.

"It's strange this came back at the same time all these other girls and were in the area," Jeff Brownell said.

------------

[That has to be an important clue. Corinth and LeRoy seem to be over 100 miles apart. The activities of the Corinth case in LeRoy need to be thoroughly investigated. But what could she have been exposed to iin LeRoy, that the girls who live in LeRoy would also have been exposed to, but no one else in any of their families would have? Of course, this could also just be a case of Tourette's Syndrome and unrelated to the LeRoy outbreak, but that would be a pretty unusual coincidence.] - alert
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  #41  
Old January 20th, 2012, 07:13 PM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

NINDS Sydenham chorea - (SD) via Group A beta-hemolytic streptococcus (GABHS)

What is Sydenham Chorea?

Sydenham chorea (SD) is a neurological disorder of childhood resulting from infection via Group A beta-hemolytic streptococcus (GABHS), the bacterium that causes rheumatic fever. SD is characterized by rapid, irregular, and aimless involuntary movements of the arms and legs, trunk, and facial muscles. It affects girls more often than boys and typically occurs between 5 and 15 years of age. Some children will have a sore throat several weeks before the symptoms begin, but the disorder can also strike up to 6 months after the fever or infection has cleared. Symptoms can appear gradually or all at once, and also may include uncoordinated movements, muscular weakness, stumbling and falling, slurred speech, difficulty concentrating and writing, and emotional instability. The symptoms of SD can vary from a halting gait and slight grimacing to involuntary movements that are frequent and severe enough to be incapacitating. The random, writhing movements of chorea are caused by an auto-immune reaction to the bacterium that interferes with the normal function of a part of the brain (the basal ganglia) that controls motor movements. Due to better sanitary conditions and the use of antibiotics to treat streptococcal infections, rheumatic fever, and consequently SD, are rare in North America and Europe. The disease can still be found in developing nations. - ninds.nih.gov

What is the prognosis?

Most children recover completely from SD, although a small number will continue to have disabling, persistent chorea despite treatment. The duration of symptoms varies, generally from 3 to 6 weeks, but some children will have symptoms for several months. Cardiac complications may occur in a small minority of children, usually in the form of endocarditis. In a third of the children with the disease, SD will recur, typically 1 ½ to 2 ½ years after the initial attack. Researchers have noted an association between recurrent SD and the later development of the abrupt onset forms of obsessive-compulsive disorder, attention deficit/hyperactivity disorder, tic disorders, and autism, which they call PANDAS, for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus infection. Further studies are needed to determine the nature of the association and the biological pathways that connect streptococcal infection, autoimmune response, and the later development of these specific behavioral disorders. - ninds.nih.gov


http://www.ninds.nih.gov/disorders/s...#Organizations

The link above came from a comment posted in the News 7 - WKBW concerning the LeRoy Students (link to WKBW article is below).

http://wnymedia.net/offsite/?offsite...137165078.html

Commenting on the article above, Commenter Tammie Heazlit States:

"I believe its the same disease I had when I was young and it took the Drs two years to diagnose.Certainly manifests the same and the medical community had the same response. I believe it could be Sydenhams Chorea. Its starts with a low level bacterial infection that doesn't clear up, autoimmune related, and affects the central nervous system. It tends to affect girls more than boys. The infection can be below the typical level of detection and so escapes notice. It could have been contracted at the school initially and would easily escape notice. At the very least it needs to be ruled out."
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  #42  
Old January 20th, 2012, 07:28 PM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Quote:
Originally Posted by Digger View Post
NINDS Sydenham chorea - (SD) via Group A beta-hemolytic streptococcus (GABHS)

What is Sydenham Chorea?

Sydenham chorea (SD) is a neurological disorder of childhood resulting from infection via Group A beta-hemolytic streptococcus (GABHS), the bacterium that causes rheumatic fever. SD is characterized by rapid, irregular, and aimless involuntary movements of the arms and legs, trunk, and facial muscles. It affects girls more often than boys and typically occurs between 5 and 15 years of age. Some children will have a sore throat several weeks before the symptoms begin, but the disorder can also strike up to 6 months after the fever or infection has cleared. Symptoms can appear gradually or all at once, and also may include uncoordinated movements, muscular weakness, stumbling and falling, slurred speech, difficulty concentrating and writing, and emotional instability. The symptoms of SD can vary from a halting gait and slight grimacing to involuntary movements that are frequent and severe enough to be incapacitating. The random, writhing movements of chorea are caused by an auto-immune reaction to the bacterium that interferes with the normal function of a part of the brain (the basal ganglia) that controls motor movements. Due to better sanitary conditions and the use of antibiotics to treat streptococcal infections, rheumatic fever, and consequently SD, are rare in North America and Europe. The disease can still be found in developing nations. - ninds.nih.gov

What is the prognosis?

Most children recover completely from SD, although a small number will continue to have disabling, persistent chorea despite treatment. The duration of symptoms varies, generally from 3 to 6 weeks, but some children will have symptoms for several months. Cardiac complications may occur in a small minority of children, usually in the form of endocarditis. In a third of the children with the disease, SD will recur, typically 1 ½ to 2 ½ years after the initial attack. Researchers have noted an association between recurrent SD and the later development of the abrupt onset forms of obsessive-compulsive disorder, attention deficit/hyperactivity disorder, tic disorders, and autism, which they call PANDAS, for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus infection. Further studies are needed to determine the nature of the association and the biological pathways that connect streptococcal infection, autoimmune response, and the later development of these specific behavioral disorders. - ninds.nih.gov


http://www.ninds.nih.gov/disorders/s...#Organizations

The link above came from a comment posted in the News 7 - WKBW concerning the LeRoy Students (link to WKBW article is below).

http://wnymedia.net/offsite/?offsite_url=http%3A%2F%2Fwww.wkbw.com%2Fnews%2Flo cal%2F137165078.html

Commenting on the article above, Commenter Tammie Heazlit States:

"I believe its the same disease I had when I was young and it took the Drs two years to diagnose.Certainly manifests the same and the medical community had the same response. I believe it could be Sydenhams Chorea. Its starts with a low level bacterial infection that doesn't clear up, autoimmune related, and affects the central nervous system. It tends to affect girls more than boys. The infection can be below the typical level of detection and so escapes notice. It could have been contracted at the school initially and would easily escape notice. At the very least it needs to be ruled out."
A previous article in this thread (#24) indicates that PANDAS has apparently been ruled out. No indication of any testing for or results on SD.
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  #43  
Old January 20th, 2012, 07:40 PM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

A bit of the epidemiology here:

http://www.cbsnews.com/8301-501367_1...psychological/

[snip]

"Some of them were friends, some played on the same soccer team and all are in the same high school," Mechtler said.

---------

There are a lot of questions raised by this and the above post:

What did the girl in Corinth eat at that restaurant, and when?
Do any of the LeRoy girls eat (or work?) at that restaurant?

[Without any evidence of a second case linked to the restaurant, please do not publish the name of the restaurant here. - alert]

Was the "sporting event" in the Corinth case a soccer game?
Is this soccer team an intramural one or do they play other schools? Has anyone been affected at those schools?
Are there enough links between the 12 cases in LeRoy to connect them all via contact?
Do they live in the same area of the town?
LeRoy is reasonably close to the Canadian border; are there any cases on the other side of the border?

...and so on. A thorough investigation of these facts is likely underway.
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  #44  
Old January 21st, 2012, 07:43 AM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

I just wanted to add a tidbit of information concerning the Indiana cases (my nephew). Last night I was having a discussion with his father(brad2112) about any possble links the reported cases might have.

There were a number of things discussed but during that discussion, it was recalled that both Indiana cases were present on a band sponsored trip to New York City during Spring Break 2011. This would have been in the late March-early April 2011 time frame. This was not for a band competition or event. It was strictly sightseeing.

The trip was strickly as tourists. The destination was New York City. We are unsure at this time concerning the actual dates of the trip and the specific itinerary. It is unclear if this trip included a visit to Niagra Falls. If this happens to be the case, the natural route that would have been taken between New York City and Niagra Falls would have placed the (2) Indiana cases approximately 8 miles north of LeRoy on I-90 during this time.

I don't know if this information is relevant or not. But in leu of a possible lengthy delay between exposure of a possible cause to onset of illness, I thought this may be a point of interest.

I will try to get more specifics later on today in regards to the itinerary and specific timeline invlolved.

Last edited by Digger; January 21st, 2012 at 04:15 PM. Reason: Crrected Spelling of Competition
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  #45  
Old January 21st, 2012, 09:52 AM
Anne Anne is online now
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

My english is too bad : so I cannot explain..
do you have search at " basal ganglia and neurological disorders" ?

try this link for some anatomy ( beginner, intermediate, advanced ) http://thebrain.mcgill.ca/flash/i/i_...06_cr_mou.html
The functions of the basal ganglia are complex and still largely unknown
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  #46  
Old January 21st, 2012, 12:18 PM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Before I share our similar story with my son, I’d like to really commend these girls on their courage in coming forward. My thoughts and prayers go out to them and their families. Also, I will start by telling you that our story has a good ending with 100% recovery.

My son, 9 at the time, started his symptoms in November of 2010 (a little over a year ago). The symptoms started 2 weeks after his Flu shot (actually he got the nasal mist). I remain suspicious that this was the instigator in our case, but we never were able to confirm it. I wonder if the girls in NY had Flu shots possibly from the same source around the same time? Would make sense given they all started their symptoms in October (Flu shot season).

What started out we though was viral (cough, stridor) morphed several times during the course of his illness. Most disturbing were the acute chest pains which were seemingly random and twitch-like and then came the near complete paralysis of his legs. Over the period of three weeks we were in and out of ER visits and tested everything. After all tested clear, the diagnosis turned to conversion disorder. I did a lot of reading on this and had a hard time dismissing organic causes. A top Pediatric Neurologist @ UCSF saw my son and ruled out things like Guillain-Barre syndrome, but also let me know that there had been some strange reactions reported with regard to the Flu shot – so I still remain suspicious of this. What I also found is that conversion disorders are often triggered by organic causes. So it’s NOT an either/or.

Once it was clear that after all the tests that there was no apparent imminent life threatening known cause, we started to treat this as if it was a conversion reaction. There was really no harm in pursuing this treatment path and there was no logical reason to dismiss this as a possiblity. A big clue for me throughout this scary ordeal was that when he slept, the symptoms went away (no chest pain surges, legs moved when nudged, etc.) . At that point I felt there was enough to signal this had a mind/body neurological component when he was conscious. So we started a combination of pediatric physical therapy and Cognitive Behavioral Therapy (CBT). I wonder if these twitches for the girls in NY subside during their sleep?

At any rate, the first order of business in CBT was to take the spotlight of the symptoms – treating the symptoms in a more nonchalant – even normal daily life - way. This was an unnatural act, but after two weeks – with the spotlight off of all the doctor visits, extreme parental attention and concern, etc. etc.. I can tell you that it started working. It took about four months to go from hints of leg movement (toes), to kneeling, to crutches, etc.. He is now he is 110% and doing fantastic.

In summary, my belief is our situation started with the Flu shot or some strange virus, but then morphed into a conversion reaction probably due to the trauma, stress, and fear of the ER visits. I believe it was all nervous system and neurological and the most effective treatment we pursued was CBT therapy (which also required changes in OUR behavior and OUR reaction to his surges). We did not pursue any medications other than pain killers which didn't seem to help by the way.

I hope our story helps. I’m happy to clarify any points or answer any questions in attempt to help these girls in NY and others.
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  #47  
Old January 21st, 2012, 12:39 PM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Just a quick question from the affected group. Since the last poster put Flu Vaccine as a possibility. I was wondering if any of the Girls at Giardisal Vaccine?
I know that it would be ruled out immediately, but just wondering.
Also, it would be interesting to see if any of the girls or affected parties got any type of vaccine?
Thank you and I hope this was ok to ask?
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  #48  
Old January 21st, 2012, 12:50 PM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Quote:
Originally Posted by alert View Post

UPDATE AND CLARIFICATION: The mention of types of drugs above wasn't meant to exclude from the meaning, as it does, that designer drugs weren't investigated as a cause. They were and subsequently ruled out as a cause. PANDAS has been ruled out as a cause. HPV vaccine has also been ruled out as a cause, according to Dr. Young. ODD or ADHD can make a child more susceptible to tics, but that isn't a cause. One thing Young intimated is that there is no one cause for all the girls.
That was post #24. Gardisil is the HPV vaccine, and it has been ruled out. The illness in post #46 is significantly different than that reported in the rest of this thread, with a respiratory component and paralysis.
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Old January 21st, 2012, 01:30 PM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Yes and no to Post #48. Watching the girls on TV my wife and I saw very similar components to what we experienced with our son - hence my reply. Our son's symptoms began to morph during the course of his illness both in location and severity. In the end, the doctors believed it all seemed from neurological and/or psychosomatic origins. We suspect what triggered it all was his reaction to the Flu shot or something viral. Also during the whole course there were no signs of infection - fever or otherwise.

Hope that helps.
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  #50  
Old January 21st, 2012, 01:31 PM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Thank you everyone for participating.

In the future, please post all personal stories to this thread in the discussion forum:

http://www.flutrackers.com/forum/sho...597#post437597

This is a news only thread.


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  #51  
Old January 21st, 2012, 03:58 PM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

An overview of Tourette's Syndrome is available at Oliver Sacks blog (http://www.oliversacks.com/2011/05/27/tourettesville/ ). Sacks' neurologist experience with patients with this syndrome may help many to understand better this condition and its causes.
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  #52  
Old January 22nd, 2012, 10:11 PM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

One Addtional Case Came Forward from Corinth, NY

Alycia Nicholson also has been ill with the tics and seizures since May 2011. The problems are still ongoing for both Corinth Girls.

Quote:
"When you look at all the symptoms there's something very dark, it's bigger than that" says Nicholson’s father Randy.

The two girls play softball together. Nicholson started having symptoms in May, Brownell in August. Both experience twitching that turns into body convulsions.

"There is something actually happening to their bodies, something I believe is coming from the outside, the environment somehow" adds Nicholson.
The (2) Indiana cases left our local Indiana school on a bus for a band trip to New York City on the early evening of March 20, 2011, I do know they were in Central Park on 3/22/2011.

Read more: http://www.cbs6albany.com/articles/s...#ixzz1kFKdZP4a

Last edited by Digger; January 22nd, 2012 at 10:16 PM. Reason: Added Note about May 2011 onset for Alycia
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  #53  
Old January 23rd, 2012, 08:00 AM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

That pretty much clears both the restaurant and the unidentified sporting event, which took place in July, since one of the Corinth cases was already ill. It also probably clears person-to-person contact because Alycia was ill in May, before any of the LeRoy cases, and did not have contact with any of them (there is no evidence she travelled with her teammate, as she was already ill).

I do notice, in addition to all the New York case being female, that an unusually high proportion of them are involved in outdoor sports. This thread contains mention that several in LeRoy play soccer together, at least one is a cheerleader, and the two in Corinth play softball. The question is, what exposures might outdoor sports produce (and why havent, for example, the entire football team been sickened)?
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  #54  
Old January 23rd, 2012, 08:59 PM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Alert,

In reply to your post #53 above,

Quote:
I do notice, in addition to all the New York case being female, that an unusually high proportion of them are involved in outdoor sports. This thread contains mention that several in LeRoy play soccer together, at least one is a cheerleader, and the two in Corinth play softball. The question is, what exposures might outdoor sports produce (and why havent, for example, the entire football team been sickened)?
I believe you are correct. The (2) Indiana cases were both in the High School band. I also noticed a photo showing Thera Sanchez was in Flags during the Today show interview. Many of these activities are "camped" prior to and after the school closing for the summer break. Band practice for the (2) Indiana cases began weeks before the school opening. The school facilities are used for activities throughout the summer and as you stated, they involve being outdoors for extended periods of time.

Just to clarify, I don't think the focus should be on the school as being the cause(fault) of this. It just happens to be where these kids are having contact, within different degrees, with one another.

In another reported outbreak of (10) cases of the LeRoy symptoms at one school, many of the teens were also involved in sports activities including football and track. I will try to get details of this other reported outbreak posted within the next 24 hours. There is a lot of information on this other outbreak that is relevant to the LeRoy outbreak that needs to be sorted out first before posting.

Last edited by Digger; January 23rd, 2012 at 09:06 PM. Reason: Added notation that I was replying to post #53
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  #55  
Old January 24th, 2012, 05:30 AM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

A Timeline of Events Surrounding 10 cases of an Outbreak of Mystery Twitching at William Byrd High School in Vinton, Va

The PDF document attached to this post details (10) Cases (including a teacher) of a Mysterious Twitching Illness at William Byrd High School in Vinton,VA.

The events, seasonal timeline, of this outbreak are eerily similar to the LeRoy outbreak. There is one major difference. The obvious was right infront of the health officials the entire time of their investigation.

Links to each of the source articles is provided in the timeline. Unfortunately, they are not hot linked in the PDF. To read the source articles (please do) you will need to cut and paste the entire address into your browser window.

Staph, Strep (MRSA) was all over in these area schools.

Last edited by Digger; January 24th, 2012 at 05:32 AM. Reason: added "including a teacher"
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Old January 24th, 2012, 05:45 AM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

New LeRoy Student With Strange Illness Emerges
WGRZ-TV


WRGZ-Reporting (link to article and accompaning video is below)

Quote:
LEROY, NY -- LEROY, NY -- Another student is now dealing with that strange illness in LeRoy. Now the National Institute of Health is planning to come to the area to search for answers. This comes at a time when the parents of the sick students are losing confidence in local doctors and plan to work with a new specialist.
Quote:
That doctor is Rosario Trifilett, a pediatric neurologist from Rockland County. He's a specialist in an autoimmune disease called PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms worsen following strep. infections such as "Strep throat" and Scarlet Fever.
Quote:
Meantime, many of the parents of the other teens are having trouble accepting the diagnosis of Conversion Disorder or Mass Psychogenic Illness.

Dr. Mechtler says the National Institutes of Health has reached out to Dent to do additional high end testing on the girls. He says the tests will include functional MRI, DTI, and MRS at no cost to them. Of the 10 original patients seen at Dent, Dr. Mechtler says only 5 or 6 have come back and agreed to participate.

The NIH tests will happen this Sunday.
To Alert (Flutracker Moderator): RE: Post #53 - Please read my previous post - See why I believe you were right about the sporting and extra-curricular activities having something to do with this.

Read More:http://www.wgrz.com/news/article/152...llness-Emerges

Last edited by Digger; January 24th, 2012 at 06:14 AM. Reason: Added RE: Post #53
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  #57  
Old January 24th, 2012, 07:11 AM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Nice find. The above article also contains the text:

http://www.wgrz.com/news/article/152...llness-Emerges

Instead of strep, Dr. Trifiletti says mycoplasma, or walking pneumonia, may be causing it. "We happen to be in an epidemic [of mycloplasma]. A lot of the times the kids won't have symptoms of walking pneumonia. Some of them may, but will get this instead," Dr. Trifiletti said by phone.

But Dr. Mechtler told Two On Your Side's Melissa Holmes by phone that he stands by his diagnosis of Conversion Disorder. He said he ruled out PANDAS because it's an exceedingly rare disease that occurs before the age of 11, although he says there are some exceptions. He says only one of the girls had a throat infection, but he will remain open-minded.

[Mycoplasma is apparently fairly difficult to detect, at least according to several other threads here at FT. But I don't know if this would explain the unusual epidemiology on this one, especially if some link to outdoor sports is suspected. Is it conceivable that this may be the result of several factors, which only when combined cause such cases? We will see what further testing reveals, and the NIH involvement will certainly help. Notably the article hints that PANDAS has been excluded based on the age group, not the result of negative cultures. - alert]
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Old January 24th, 2012, 07:30 AM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Quote:
Originally Posted by Anne View Post
My english is too bad : so I cannot explain..
do you have search at " basal ganglia and neurological disorders" ?

try this link for some anatomy ( beginner, intermediate, advanced ) http://thebrain.mcgill.ca/flash/i/i_...06_cr_mou.html
The functions of the basal ganglia are complex and still largely unknown
Anne, thank you for that link to the brain anatomy article in post #48 that was very helpful in understanding the pathways and interactions for memory, movement and cognition.

Last edited by Digger; January 24th, 2012 at 07:31 AM. Reason: Added in post #48
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Old January 24th, 2012, 07:54 AM
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

I agree with Alert that this is a very good find, Digger, and you did great work correlating the bacteria outbreaks that were going on at the same time.

Alert brought up the possibility of some 3rd factor in these cases and there's an article here that says there was a botulism cluster about the same time as the the 2007 Virginia area tic outbreak.

http://www.roanoke.com/news/roanoke/wb/140446
Quote:
Second death may be linked to botulism
Health officials would not say that George Makarie's death was related to his wife's.

By Annie Johnson
981-3340

The Virginia Department of Health has confirmed a second death connected to the recent investigation of two possible botulism cases.

[snip]

Meanwhile, at least one botulism expert has said that health authorities' "veil of secrecy" over the cases has left the public without potentially lifesaving information.

[snip]

Local health officials have said that with the recent proliferation of public health emergencies in the Roanoke area, there was less attention paid to informing the public about the causes and dangers of botulism.

The other incidents involved unusual twitching reported at Vinton's William Byrd High School and Methicillin-resistant Staphylococcus aureus infections of students from various schools in the region.

"It's a good point," said Robert Parker, a regional spokesman for the health department. "It's been a busy time in the Roanoke area for public health."...
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Old January 24th, 2012, 09:12 AM
Anne Anne is online now
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Default Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

I m searching...
here is an old paper...( they did'nt have much serological test or antibody tests but some details are interresting )

Bulletin of the World Health Organization, 58 (2): 297-311 (1980)
Neurological diseases associated with viral and
Mycoplasma pneumoniae infections


http://www.ncbi.nlm.nih.gov/pmc/arti...00425-0128.pdf

Helsinki, Finland
From 1971, outbreaks of acute respiratory disease
associated with Mycoplasma pneumoniae were
reported from different parts of Finland. The outbreaks
reached a peak in 1972, continued during 1974
and 1975, and began to abate in 1976. A number of
these cases of M.pneumoniae acute respiratory
disease showed neurological signs. However, during
these prolonged outbreaks, cases of neurological
disease occurred where there were no signs of acute
respiratory infection
but in which there was laboratory
evidence of M. pneumoniae infection
(a four-fold or
more rise in CF titre in paired sera).
Altogether, during the period 1973-76 inclusive,
M. pneumoniae was diagnosed by the laboratory in 69
cases in which neurological involvement was a leading
clinical manifestation.
However, in 12 of these cases,
viruses were also implicated, and in 2 cases the leading
neurological sign was convulsions. M.pneumoniae
was the only agent incriminated by the laboratory in
55 cases of definite neurological involvement. These
55 cases are the subject of the present study.
The first case was reported in June 1973 and was
diagnosed as aseptic meningitis. By the end of 1973, 12
cases had been noted. In 1974, there were 23 cases and
in 1975 there were 16. In 1976, only 4 cases were
diagnosed.
In 33 cases the main clinical manifestation was
aseptic meningitis, in 14 cases it was encephalitis, in 4
cases meningoencephalitis, in 3 Guillain-Barre syndrome,
and in 1 case hemiplegia. Fever was noted in 49
cases, respiratory involvement in 13 cases (signs of
upper respiratory infection in 10 and of lower respiratory
infection in 3), enteritis in 7 cases, and skin rash
in 3 cases. In 1 case of meningitis, endocarditis was
also diagnosed.

//...///Clinically,this picture of neurological involvement does not
usually differ from that caused by viruses except for a
high incidence of associated respiratory infection (6).
In the present study, respiratory infection was present
in one-quarter of cases, although it is most probable
that the respiratory symptoms were overlooked when
the more severe neurological disease was reported.

306
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