This is topic Lyme Disease Fact Sheet- Maryland and Other States in forum Activism at LymeNet Flash.


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Posted by Tincup (Member # 5829) on :
 
This can be adjusted to fit any state by removing the "Maryland specific" information and inserting your own states information.

Or... you can leave out the Maryland stuff all together and just make it shorter to use at events as a handout or on emails.

[Big Grin]


MARYLAND LYME DISEASE FACT SHEET 2009


Growing Epidemic

The CDC states Lyme disease is vastly underreported, with only 10% of cases that meet its surveillance criteria being recorded. This translates into more than a quarter of a million (250,000) new cases of Lyme disease in the USA each year.

Maryland Department of Health and Mental Hygiene (DHMH) recently reported cases of Lyme disease in the state climbed 106% in one year (2006-2007).

Lyme disease cases experienced a 1,331% increase since reporting began in 1993. Using the CDC's 10-fold assessment, over 150,000 Maryland residents have already contracted Lyme, making it the fastest growing vector borne disease in the state.

Lyme Disease- Not Just a Rash and a Swollen Knee

The Lyme disease bacterium has the ability to enter the brain less than 24 hours after a tick bite. It is called the ``great imitator,'' because it can mimic lupus, arthritis, MS, fibromyalgia, dementia, ALS, chronic fatigue, Parkinson's, Alzheimer's and even autism.

Animal studies indicate in less than a week the Lyme spirochete (Borrelia burgdorferi) can be deeply embedded inside tendons, muscles, tissues, the heart and the brain. As the spirochetes invade tissues they replicate, then destroy their host cell as they emerge. The cell wall can collapse around the bacterium, forming a cloaking device, allowing it to evade detection by many tests and by the body's own immune system.

In humans, infection with the Lyme disease bacteria can lead to early symptoms such as severe headaches, debilitating fatigue, fever, joint and muscle pain, and skin rashes. Late stage infection can lead to problems related to the central nervous system and can negatively affect the brain, heart and muscular-skeletal system. Symptoms of Lyme disease vary for each individual patient, and also vary in intensity over the course of the disease. The late stages have been described in studies as being equivalent to having moderate cognitive impairment, combined with a level of physical dysfunction comparable to patients with congestive heart failure; and fatigue comparable to patients with multiple sclerosis.

On average, patients with chronic Lyme disease had symptoms for 1.2 years before being correctly diagnosed, with some having debilitating symptoms for ten or more years before they received a proper diagnosis. At the highest risk of acquiring this serious disease are children, ages 5-14.

As many as 63% of Lyme patients in Maryland had no known tick bite and approximately half reported not having the classic ``bulls-eye'' rash. More than 50% developed serious brain or central nervous system involvement, many requiring hospitalization. Over 40% of Lyme patients in Maryland reported arthritic symptoms, such as painful joint swelling. When treated with less than six weeks of antibiotics, up to 40% of patients with Lyme disease continue to have symptoms or relapsed after receiving what was considered to be ``adequate'' therapy.

The spirochetes that cause Lyme disease (related to syphilis) have been detected in breast milk, umbilical cords, the uterus, semen, urine, blood, the cervix, tears, the brain, and other body fluids and tissues. Often entire families are found to be infected. In a recent study of children with Lyme disease, researchers noted that an average of four doctors were seen before a proper diagnosis was made.

The Kicker

According to a recent study from Johns Hopkins, Lyme tests miss 75% of the people who are infected with Borrelia burgdorferi (Lyme disease). Additional medical literature indicates up to 90% of patients are missed.

Maryland patients spend approximately $3,000,000.00 per year on inaccurate Lyme tests. To compound the problem, results of these tests are often used improperly by physicians in determining if a patient has Lyme and should or should not receive treatment.

The Infectious Diseases Society of America (IDSA) Lyme disease treatment guidelines (favored by insurance companies) recommend that patients should have not one, but two positive Lyme tests before receiving treatment. Insurance companies routinely use those guidelines as a basis to deny reimbursement for treatment.

CT Attorney General, Richard Blumenthal, recently concluded a lengthy investigation of the IDSA guidelines development process. He uncovered serious flaws in the guidelines and currently a new panel is reviewing them with the assistance of an outside arbiter. Blumenthal stated in his press release in May 2008, "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.''

Ticks and The Diseases They Carry

During a CDC funded study conducted at 21 sites in nine different states, 1,799 ticks were collected and tested for the presence of Lyme disease (Bb). An astounding 81% of the ticks from the Maryland were infected with Lyme. There are a higher number of infected ticks in Maryland than at any other site in the United States, including what were thought to be the most endemic counties in NY, CT, PA and NJ. The rate of Lyme infected ticks in Maryland is two times higher than the national average.

Over 300 strains of Lyme (Bb) have been identified to date and the list continues to grow. Tests currently on the market are only designed to detect exposure to one of the Borrelia (Lyme) strains found in humans. In addition, over 20 strains of Babesiosis (a tick borne co-infection) are unable to be detected in humans using standard blood tests.

A newly discovered Borrelia (Lyme-like) organism, STARI (Southern Tick Associated Rash Illness), found in ticks cannot be detected by the current Lyme disease tests. Studies indicate this spirochete is found in 10-20% of ticks studied and there may be other unidentified microbes present. Researchers are advising physicians to change their approach to diagnosis and treatment.

The Lyme disease spirochete (Bb) is pleomorphic, meaning that it can radically change form. This protective measure allows the spirochete to hide and protect itself from the threat of antibiotics. Once the threat is removed, the spirochetes can change forms once again, multiply, continue to do damage, and patients may relapse with varying symptoms.

Cystic forms of Lyme (also called spheroplasts, L-forms, or starvation forms) and their ability to reconvert into normal spirochetes have been demonstrated in Borrelia burgdorferi. The recovery of spheroplasts, L-forms, and other variants of spirochetes have been reported from blood, body fluid, and tissues of humans and animals.

Lyme disease, Babesiosis, Bartonella henselae and quintana (cat scratch fever and trench fever), Rocky Mountain spotted fever, histoplasmosis, Brucellosis, ehrlichiosis, anaplasmosis, Southern Tick Associated Rash Illness (STARI), Tularemia (rabbit fever), Mycoplasma, leptospirosis, parvo B-19 virus and Masters disease are some of the various infections (some which are also are life-threatening) that may be passed to animals or humans through the bite of an infected tick or other vector.

Most health care professionals are not familiar with these infections; therefore, they are not testing, diagnosing, reporting, or treating them. Untreated or under treated patients can quickly advance to late or chronic stages of the diseases. Once reaching the chronic stage, Lyme disease is more expensive, time consuming and more difficult to treat or cure.

Reports are on the rise concerning the death of patients receiving donated blood that contained tick borne disease organisms. The Red Cross admits their storage procedures do not kill the spirochetes that cause Lyme disease, nor do they kill the Babesia organisms. Our nation's blood supply is not routinely tested for these vector borne infectious diseases, putting many American's at risk.

The Financial Cost to Society

The long-term cost of Lyme disease to families, school systems, the health care system and the economy is shocking. The average diagnosis and treatment costs and lost wages related to chronic Lyme disease are $61,688.00 per year, per patient. Lyme disease currently costs society about $2 billion per year. This includes unnecessary or inappropriate medical care, lost productivity, and other direct/indirect expenses.

Mothers and fathers are losing their jobs and their homes due to the inability to work and the cost of treatment. Many eventually must apply for disability after failing to get a proper diagnosis and treatment and becoming chronically ill or disabled. The federal and state government is footing the bill for many of the misdiagnosed and chronic cases that slip through the current system and the numbers continue to grow at an alarming rate.

Treatment Considerations

A preponderance of the evidence indicates that active ongoing spirochetal infection is the cause of the persistent symptoms found in chronic Lyme disease patients. Extended antibiotic treatment has been effective in improving the quality of life for many who are chronically ill.

*** The above facts and figures are from reports from the CDC, FDA, NIH, International Lyme and Associated Disease Society (ILADS), Lyme Disease Association (LDA), Yale, Johns Hopkins, National Library of Medicine and the Maryland Department of Health and Mental Hygiene (DHMH).
 
Posted by Leelee (Member # 19112) on :
 
Sheesh! 81% of the ticks in Maryland are infected with Lyme! [Eek!]

Thank you TinCup, once again, for providing us with important information.

I wonder what the Dept. of Health plans to do with this information now that they have published it. Hopefully it will be used to educate doctors.
 
Posted by bettyg (Member # 6147) on :
 
breaking this up for neuro lyme folks like me who can't read the longer solid text comments [Smile] betty


quote:
Originally posted by Tincup:

This can be adjusted to fit any state by removing the "Maryland specific" information and inserting your own states information.

Or... you can leave out the Maryland stuff all together and just make it shorter to use at events as a handout or on emails. [Big Grin]


MARYLAND LYME DISEASE FACT SHEET 2009


Growing Epidemic

The CDC states Lyme disease is vastly underreported, with only 10% of cases that meet its surveillance criteria being recorded. This translates into more than a quarter of a million (250,000) new cases of Lyme disease in the USA each year.


Maryland Department of Health and Mental Hygiene (DHMH) recently reported cases of Lyme disease in the state climbed 106% in one year (2006-2007).


Lyme disease cases experienced a 1,331% increase since reporting began in 1993.

Using the CDC's 10-fold assessment, over 150,000 Maryland residents have already contracted Lyme, making it the fastest growing vector borne disease in the state.


Lyme Disease- Not Just a Rash and a Swollen Knee


The Lyme disease bacterium has the ability to enter the brain less than 24 hours after a tick bite.


It is called the ``great imitator,'' because it can mimic lupus, arthritis, MS, fibromyalgia, dementia, ALS, chronic fatigue, Parkinson's, Alzheimer's and even autism.


Animal studies indicate in less than a week the Lyme spirochete (Borrelia burgdorferi) can be deeply embedded inside tendons, muscles, tissues, the heart and the brain.


As the spirochetes invade tissues they replicate, then destroy their host cell as they emerge. The cell wall can collapse around the bacterium, forming a cloaking device, allowing it to evade detection by many tests and by the body's own immune system.


In humans, infection with the Lyme disease bacteria can lead to early symptoms, such as:

severe headaches, debilitating fatigue, fever, joint and muscle pain, and skin rashes.


Late stage infection can lead to problems related to the central nervous system and can negatively affect the brain, heart and muscular-skeletal system.


Symptoms of Lyme disease vary for each individual patient, and also vary in intensity over the course of the disease.


The late stages have been described in studies as being equivalent to having moderate cognitive impairment, combined with a level of physical dysfunction comparable to patients with congestive heart failure; and fatigue comparable to patients with multiple sclerosis.


On average, patients with chronic Lyme disease had symptoms for 1.2 years before being correctly diagnosed, with some having debilitating symptoms for ten or more years before they received a proper diagnosis.


At the highest risk of acquiring this serious disease are children, ages 5-14.


As many as 63% of Lyme patients in Maryland had no known tick bite and approximately half reported not having the classic ``bulls-eye'' rash.


More than 50% developed serious brain or central nervous system involvement, many requiring hospitalization.


Over 40% of Lyme patients in Maryland reported arthritic symptoms, such as painful joint swelling.


When treated with less than six weeks of antibiotics, up to 40% of patients with Lyme disease continue to have symptoms or relapsed after receiving what was considered to be ``adequate'' therapy.


The spirochetes that cause Lyme disease (related to syphilis) have been detected in:

breast milk, umbilical cords, the uterus, semen, urine, blood, the cervix, tears, the brain, and other body fluids and tissues.


Often entire families are found to be infected.

In a recent study of children with Lyme disease, researchers noted that an average of four doctors were seen before a proper diagnosis was made.


The Kicker

According to a recent study from Johns Hopkins, Lyme tests miss 75% of the people who are infected with Borrelia burgdorferi (Lyme disease).


Additional medical literature indicates up to 90% of patients are missed.


Maryland patients spend approximately $3 million per year on inaccurate Lyme tests.


To compound the problem, results of these tests are often used improperly by physicians in determining if a patient has Lyme and should or should not receive treatment.


The Infectious Diseases Society of America (IDSA) Lyme disease treatment guidelines (favored by insurance companies) recommend that patients should have not one, but two positive Lyme tests before receiving treatment.


Insurance companies routinely use those guidelines as a basis to deny reimbursement for treatment.


CT Attorney General, Richard Blumenthal, recently concluded a lengthy investigation of the IDSA guidelines development process.


He uncovered serious flaws in the guidelines and currently a new panel is reviewing them with the assistance of an outside arbiter.


Blumenthal stated in his press release in May 2008,

"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.''


Ticks and The Diseases They Carry

During a CDC funded study conducted at 21 sites in nine different states, 1,799 ticks were collected and tested for the presence of Lyme disease (Bb).


An astounding 81% of the ticks from the Maryland were infected with Lyme.


There are a higher number of infected ticks in Maryland than at any other site in the United States, including what were thought to be the most endemic counties in NY, CT, PA and NJ.


The rate of Lyme infected ticks in Maryland is two times higher than the national average.


Over 300 strains of Lyme (Bb) have been identified to date and the list continues to grow.


Tests currently on the market are only designed to detect exposure to one of the Borrelia (Lyme) strains found in humans.


In addition, over 20 strains of Babesiosis (a tick borne co-infection) are unable to be detected in humans using standard blood tests.


A newly discovered Borrelia (Lyme-like) organism, STARI (Southern Tick Associated Rash Illness), found in ticks cannot be detected by the current Lyme disease tests.


Studies indicate this spirochete is found in 10-20% of ticks studied and there may be other unidentified microbes present.


Researchers are advising physicians to change their approach to diagnosis and treatment.


The Lyme disease spirochete (Bb) is pleomorphic, meaning that it can radically change form.


This protective measure allows the spirochete to hide and protect itself from the threat of antibiotics.


Once the threat is removed, the spirochetes can change forms once again, multiply, continue to do damage, and patients may relapse with varying symptoms.


Cystic forms of Lyme (also called spheroplasts, L-forms, or starvation forms) and their ability to reconvert into normal spirochetes have been demonstrated in Borrelia burgdorferi.


The recovery of spheroplasts, L-forms, and other variants of spirochetes have been reported from blood, body fluid, and tissues of humans and animals.


Lyme disease, Babesiosis, Bartonella henselae and quintana (cat scratch fever and trench fever), Rocky Mountain spotted fever, histoplasmosis, Brucellosis, ehrlichiosis, anaplasmosis, Southern Tick Associated Rash Illness (STARI), Tularemia (rabbit fever), Mycoplasma, leptospirosis, parvo B-19 virus and Masters disease --

are some of the various infections (some which are also are life-threatening) that may be passed to animals or humans through the bite of an infected tick or other vector.


Most health care professionals are not familiar with these infections; therefore, they are not testing, diagnosing, reporting, or treating them.


Untreated or under treated patients can quickly advance to late or chronic stages of the diseases.


Once reaching the chronic stage, Lyme disease is more expensive, time consuming and more difficult to treat or cure.


Reports are on the rise concerning the death of patients receiving donated blood that contained tick borne disease organisms.


The Red Cross admits their storage procedures do not kill the spirochetes that cause Lyme disease, nor do they kill the Babesia organisms.


Our nation's blood supply is not routinely tested for these vector borne infectious diseases, putting many American's at risk.


The Financial Cost to Society

The long-term cost of Lyme disease to families, school systems, the health care system and the economy is shocking.


The average diagnosis and treatment costs and lost wages related to chronic Lyme disease are $61,688 per year, per patient.


Lyme disease currently costs society about $2 billion per year. This includes unnecessary or inappropriate medical care, lost productivity, and other direct/indirect expenses.


Mothers and fathers are losing their jobs and their homes due to the inability to work and the cost of treatment.


Many eventually must apply for disability after failing to get a proper diagnosis and treatment and becoming chronically ill or disabled.

The federal and state government is footing the bill for many of the misdiagnosed and chronic cases that slip through the current system and the numbers continue to grow at an alarming rate.


Treatment Considerations

A preponderance of the evidence indicates that active ongoing spirochetal infection is the cause of the persistent symptoms found in chronic Lyme disease patients.


Extended antibiotic treatment has been effective in improving the quality of life for many who are chronically ill.


*** The above facts and figures are from reports from the:

CDC,
FDA,
NIH,
International Lyme and Associated Disease Society (ILADS),
Lyme Disease Association (LDA),
Yale,
Johns Hopkins,
National Library of Medicine and the
Maryland Department of Health and Mental Hygiene (DHMH)

interesting facts; thx tc! [Smile]
 
Posted by mushroomman06 (Member # 13088) on :
 
T.C.

Thank you so much for sharing the wealth of info. you have supplied to us.

The time and effort that you have put forth on the newest post and all those in the past have been put to good use.

I have made it a number one goal on my part to help educate and bring about the awareness of this serious LYME epidmic to others.

The info. you offer helps in meeting this goal.

Again, one great big THANK YOU!
 
Posted by lakes592 (Member # 18905) on :
 
Looks good! Thanks.
 
Posted by Tincup (Member # 5829) on :
 
Leeeeeeeeleeeee...

You said.... "I wonder what the Dept. of Health plans to do with this information now that they have published it."

Just to be sure we are on the same page... and MY brain is working.... and I didn't misrepresent something above....

The DHMH in Maryland did not publish this paper. I wrote it from facts/figures I got from various official sites... and am posting it so you all can use it as needed.

As a matter of fact.... the good old DHMH reps were speaking up just last night saying they don't agree with "our" (Maryland) "treatment" recommendations, however, they appreciate the Lyme support groups sharing prevention and awareness tips.

[dizzy]

TOADS!

AND...

To me this indicates they are AGAIN crossing the line and supporting guidelines (a BIG NO NO!), to the exclusion of others, that have been found to be written by IDiots who SHOULD be in jail, in MY opinion.

They speak with forked tongues.

One tongue says they only deal with Prevention of Lyme and don't take sides for guidelines or have anything to do with treatment... then the other tongue states PUBLICLY that they disagree with the ILADS guidelines recommended TREATMENT!!!!

UGGGGGGG!!!!!

Anyhow... I wrote it and just wanted to be sure you didn't think or share with others that they did.

I would imagine they would blow up a storm and rain all over you if you said THEY said anything like this.

Cause it is too true!

[lol]

And thanks for your comments!

[Big Grin]
 
Posted by Leelee (Member # 19112) on :
 
Oh my gosh, TinCup, I am so sorry I misunderstood that you were the wonderful author of this document. You would not believe how addle-brained I have become. [Roll Eyes]

Of course you wrote it! The Department of Health would never be so accurate, thorough or well-spoken.

Not to mention that they wouldn't dare divulge so much "bad press" so to speak.

Please accept my apologies! You wrote an informative, detailed piece and I learned a lot. You are the best! [Smile]
 
Posted by Tincup (Member # 5829) on :
 
BTW- That 81% was years ago. My guess is- it is the same or worse now... and more widespread.

The first report of infected ticks in Maryland came from Assateaque (spell) Island many moons ago. It was done...as were many early Maryland studies... by out of state schools and scientists/researchers.

Maryland DHMH or Hopkins (one in the same).... they never ever ever took the ball and ran with it when they had a chance to DO SOMETHING about it. Now people suffer and are dying.

The early reports were either late 1970's or early 1980's. Several reports.

And if I remember right... back then all of the animals tested except for the short-nosed shrew were infected.

I've tried and tried and tried to get them to do something... and they were worse than a brick wall trying to get through.

They not only ignored it.. they fought it and fought us.. and even state agencies kept the warnings in files for NO ONE to see when they were instructed to get the information out to the public.

It has been a devilish deal since day one trying to work with them.

Soooooooooo... a number of years ago I did the old swich-a-roo... as did our other state groups... and to keep our sanity we decided to act like they were a pile of puppy poo-poo on the floor and just walk around them.

Had they put out ANY effort... any effort at all... who knows, we could have had a cure by now possibly.

And even today they continue to fight us every chance they can.

I guess you can see how angry I am even talking about the DHMH. Obviously I won't ever forget. My family and others died because of them not doing their job. Protect the public.

OK.. deep breath.

[Big Grin]
 
Posted by Tincup (Member # 5829) on :
 
Mush said... "I have made it a number one goal on my part to help educate and bring about the awareness of this serious LYME epidmic to others."

Is it against LymeNet rules to tell another member you love them?

[lol]

Thanks so much, mush. I LOVE those who can and will help others.

I think I am about done. Too tired, too sick, too old for this. We need help.

I encourage anyone who can help, please do.

And thanks again Mush.... very much!

[Big Grin]
 
Posted by Leelee (Member # 19112) on :
 
Oh, TinCup. I am so sorry. You have had more than your share of sadness.

Please know how grateful we are to you for all that you do for us.

I agree with you that the 81% is the same or higher since there doesn't seem to be any effective way to rid the earth of these wretched ticks. Not more than hour ago I caught one crawling on my neck as I sat in my family room. I hadn't been outside more than 15 minutes all day and that was to take the dogs for a quick walk.

An 81% infection rate is 81% too high.
 
Posted by Tincup (Member # 5829) on :
 
Thanks lakes...

Please help yourself and insert some NH facts and feel free to share.

[Big Grin]
 
Posted by Tincup (Member # 5829) on :
 
LeeeeLeeeeee..

You keep sneaking in and I feel like I am two steps behind! HA!

I wondered and had been meaning to ask...

Do you want me to email you Maryland updates and related Lyme stuff?

I don't have an email "list" per say... just folks I sent stuff to that might be interested as it pops up.

If so... just email me and let me know.

[email protected]
 
Posted by dmbfan (Member # 11948) on :
 
i;m breaking it down into smaller pieces and emailing a new part to my email group over the next few weeks. i'm hoping consistent bombardment works!
 
Posted by bettyg (Member # 6147) on :
 
DMBFAN, did you see my broken up version?


quote:
Originally posted by bettyg:

breaking this up for neuro lyme folks like me who can't read the longer solid text comments [Smile] betty


quote:
Originally posted by Tincup:

This can be adjusted to fit any state by removing the "Maryland specific" information and inserting your own states information.

Or... you can leave out the Maryland stuff all together and just make it shorter to use at events as a handout or on emails. [Big Grin]


MARYLAND LYME DISEASE FACT SHEET 2009


Growing Epidemic

The CDC states Lyme disease is vastly underreported, with only 10% of cases that meet its surveillance criteria being recorded. This translates into more than a quarter of a million (250,000) new cases of Lyme disease in the USA each year.


Maryland Department of Health and Mental Hygiene (DHMH) recently reported cases of Lyme disease in the state climbed 106% in one year (2006-2007).


Lyme disease cases experienced a 1,331% increase since reporting began in 1993.

Using the CDC's 10-fold assessment, over 150,000 Maryland residents have already contracted Lyme, making it the fastest growing vector borne disease in the state.


Lyme Disease- Not Just a Rash and a Swollen Knee


The Lyme disease bacterium has the ability to enter the brain less than 24 hours after a tick bite.


It is called the ``great imitator,'' because it can mimic lupus, arthritis, MS, fibromyalgia, dementia, ALS, chronic fatigue, Parkinson's, Alzheimer's and even autism.


Animal studies indicate in less than a week the Lyme spirochete (Borrelia burgdorferi) can be deeply embedded inside tendons, muscles, tissues, the heart and the brain.


As the spirochetes invade tissues they replicate, then destroy their host cell as they emerge. The cell wall can collapse around the bacterium, forming a cloaking device, allowing it to evade detection by many tests and by the body's own immune system.


In humans, infection with the Lyme disease bacteria can lead to early symptoms, such as:

severe headaches, debilitating fatigue, fever, joint and muscle pain, and skin rashes.


Late stage infection can lead to problems related to the central nervous system and can negatively affect the brain, heart and muscular-skeletal system.


Symptoms of Lyme disease vary for each individual patient, and also vary in intensity over the course of the disease.


The late stages have been described in studies as being equivalent to having moderate cognitive impairment, combined with a level of physical dysfunction comparable to patients with congestive heart failure; and fatigue comparable to patients with multiple sclerosis.


On average, patients with chronic Lyme disease had symptoms for 1.2 years before being correctly diagnosed, with some having debilitating symptoms for ten or more years before they received a proper diagnosis.


At the highest risk of acquiring this serious disease are children, ages 5-14.


As many as 63% of Lyme patients in Maryland had no known tick bite and approximately half reported not having the classic ``bulls-eye'' rash.


More than 50% developed serious brain or central nervous system involvement, many requiring hospitalization.


Over 40% of Lyme patients in Maryland reported arthritic symptoms, such as painful joint swelling.


When treated with less than six weeks of antibiotics, up to 40% of patients with Lyme disease continue to have symptoms or relapsed after receiving what was considered to be ``adequate'' therapy.


The spirochetes that cause Lyme disease (related to syphilis) have been detected in:

breast milk, umbilical cords, the uterus, semen, urine, blood, the cervix, tears, the brain, and other body fluids and tissues.


Often entire families are found to be infected.

In a recent study of children with Lyme disease, researchers noted that an average of four doctors were seen before a proper diagnosis was made.


The Kicker

According to a recent study from Johns Hopkins, Lyme tests miss 75% of the people who are infected with Borrelia burgdorferi (Lyme disease).


Additional medical literature indicates up to 90% of patients are missed.


Maryland patients spend approximately $3 million per year on inaccurate Lyme tests.


To compound the problem, results of these tests are often used improperly by physicians in determining if a patient has Lyme and should or should not receive treatment.


The Infectious Diseases Society of America (IDSA) Lyme disease treatment guidelines (favored by insurance companies) recommend that patients should have not one, but two positive Lyme tests before receiving treatment.


Insurance companies routinely use those guidelines as a basis to deny reimbursement for treatment.


CT Attorney General, Richard Blumenthal, recently concluded a lengthy investigation of the IDSA guidelines development process.


He uncovered serious flaws in the guidelines and currently a new panel is reviewing them with the assistance of an outside arbiter.


Blumenthal stated in his press release in May 2008,

"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.''


Ticks and The Diseases They Carry

During a CDC funded study conducted at 21 sites in nine different states, 1,799 ticks were collected and tested for the presence of Lyme disease (Bb).


An astounding 81% of the ticks from the Maryland were infected with Lyme.


There are a higher number of infected ticks in Maryland than at any other site in the United States, including what were thought to be the most endemic counties in NY, CT, PA and NJ.


The rate of Lyme infected ticks in Maryland is two times higher than the national average.


Over 300 strains of Lyme (Bb) have been identified to date and the list continues to grow.


Tests currently on the market are only designed to detect exposure to one of the Borrelia (Lyme) strains found in humans.


In addition, over 20 strains of Babesiosis (a tick borne co-infection) are unable to be detected in humans using standard blood tests.


A newly discovered Borrelia (Lyme-like) organism, STARI (Southern Tick Associated Rash Illness), found in ticks cannot be detected by the current Lyme disease tests.


Studies indicate this spirochete is found in 10-20% of ticks studied and there may be other unidentified microbes present.


Researchers are advising physicians to change their approach to diagnosis and treatment.


The Lyme disease spirochete (Bb) is pleomorphic, meaning that it can radically change form.


This protective measure allows the spirochete to hide and protect itself from the threat of antibiotics.


Once the threat is removed, the spirochetes can change forms once again, multiply, continue to do damage, and patients may relapse with varying symptoms.


Cystic forms of Lyme (also called spheroplasts, L-forms, or starvation forms) and their ability to reconvert into normal spirochetes have been demonstrated in Borrelia burgdorferi.


The recovery of spheroplasts, L-forms, and other variants of spirochetes have been reported from blood, body fluid, and tissues of humans and animals.


Lyme disease, Babesiosis, Bartonella henselae and quintana (cat scratch fever and trench fever), Rocky Mountain spotted fever, histoplasmosis, Brucellosis, ehrlichiosis, anaplasmosis, Southern Tick Associated Rash Illness (STARI), Tularemia (rabbit fever), Mycoplasma, leptospirosis, parvo B-19 virus and Masters disease --

are some of the various infections (some which are also are life-threatening) that may be passed to animals or humans through the bite of an infected tick or other vector.


Most health care professionals are not familiar with these infections; therefore, they are not testing, diagnosing, reporting, or treating them.


Untreated or under treated patients can quickly advance to late or chronic stages of the diseases.


Once reaching the chronic stage, Lyme disease is more expensive, time consuming and more difficult to treat or cure.


Reports are on the rise concerning the death of patients receiving donated blood that contained tick borne disease organisms.


The Red Cross admits their storage procedures do not kill the spirochetes that cause Lyme disease, nor do they kill the Babesia organisms.


Our nation's blood supply is not routinely tested for these vector borne infectious diseases, putting many American's at risk.


The Financial Cost to Society

The long-term cost of Lyme disease to families, school systems, the health care system and the economy is shocking.


The average diagnosis and treatment costs and lost wages related to chronic Lyme disease are $61,688 per year, per patient.


Lyme disease currently costs society about $2 billion per year. This includes unnecessary or inappropriate medical care, lost productivity, and other direct/indirect expenses.


Mothers and fathers are losing their jobs and their homes due to the inability to work and the cost of treatment.


Many eventually must apply for disability after failing to get a proper diagnosis and treatment and becoming chronically ill or disabled.

The federal and state government is footing the bill for many of the misdiagnosed and chronic cases that slip through the current system and the numbers continue to grow at an alarming rate.


Treatment Considerations

A preponderance of the evidence indicates that active ongoing spirochetal infection is the cause of the persistent symptoms found in chronic Lyme disease patients.


Extended antibiotic treatment has been effective in improving the quality of life for many who are chronically ill.


*** The above facts and figures are from reports from the:

CDC,
FDA,
NIH,
International Lyme and Associated Disease Society (ILADS),
Lyme Disease Association (LDA),
Yale,
Johns Hopkins,
National Library of Medicine and the
Maryland Department of Health and Mental Hygiene (DHMH)

interesting facts; thx tc! [Smile]

 
Posted by lou (Member # 81) on :
 
Great job. This is the kind of thing that everyone can use with their legislators, with the appropriate adjustments made for their states.

Does this fit on two pages? That is about the maximum anyone will read. Might work even better with a few bulleted items emphasized at the beginning, in case they don't get all the way to the end. The main points. Then do the rest as an appendix.

Doctored a bit in format and for other state info, this could be put on the LDA website for activists everywhere to use. Make it easy for folks. In the layout, make it easy to substitute other state info, put state stuff in one place so people don't have to search thru the whole thing to edit. Maybe it already is like that? Got to go back and read it again.

Not sure an 81% infection rate of ticks would apply to the whole state of Maryland. These numbers tend to vary by locale, by year, and by weather.
 
Posted by Tincup (Member # 5829) on :
 
Lou said.... "Not sure an 81% infection rate of ticks would apply to the whole state of Maryland. These numbers tend to vary by locale, by year, and by weather."

You are right. And that is a good point.

And the IDSA guidelines don't account for that variability either when they tell doctors the rules set out for determining whether to treat for preventative purposes or not.

According to the guidelines, they want doctors to know the infection rates for their area ... as if that is one flat rate all the time. As you pointed out.. it isn't.

I keep laughing remembering Shapiro sitting in the witness chair in CT and being asked what an epidemic was... and he didn't know! Even the lawyers were crinkling up their faces and going, HUH? Anyhow...

MY point is that we have a problem... a big one in Maryland,,, and the General Family doctor out there is not going to be researching the nitty gritty to find these figures.. IF there are figures available.

If you average out the two sites tested in Maryland in this study, we are still over the 50% mark ... so our doctors should treat it... the earlier the better, of course.

Not that the one dose doxy they recommend is going to help... but in order to counter the IDSA's theory that "Lyme disease is rare", I want the figures we do have to be stressed.

IF other states are lucky... they have some figures to go by, but many states have none.

Maryland had two sites checked in this study about 8-9 years ago or so... and the figures were listed in with other sites in other states.

In this study we happened to beat out all others.. but it is rare to have a lot of studies to go by to compare.

Keep in mind Somerset County is in an area where there are REALLY stupid ducks for miles around.... IDSA butt kissers big time. Several of them I know of... and...

Many people living in that area work outdoors and live in prime tick country ... and those folks have a high rate of infected ticks, high exposure... but only a "tiny" number of reported cases.

Their ID duck from down that way actually went to Annapolis to fight Lyme patients when the legislators put in a bill to help them.

He got up in front of a bunch of Lyme patients who came up from his area ... many who he didn't treat properly and who suffered chronically at his hands as a result .... and everyone thought he was a jerk for coming there and testifying against a bill that would help residents of the state.

Even the legislators wanted to know what that was all about.

He has also gone to court against patients and then bragged about it later.... so NOT a decent guy.

Anyhow.. here is where the 81% figure came from.

[Big Grin]

Geographic Uniformity of the Lyme Disease Spirochete (Borrelia burgdorferi) and Its Shared History With Tick Vector ( xodes scapularis) in the Northeastern United States

Wei-Gang Qiu,* ,1 Daniel E. Dykhuizen,* ,2 Michael S. Acosta* and Benjamin J. Luft

*Department of Ecology and Evolution, State University of New York, Stony Brook, New York 11794-5245 and Department of Medicine,

Health Science Center, State University of New York, Stony Brook, New York 11794-8153

Manuscript received November 9, 2001 Accepted for publication November 29, 2001

Here is full article:

http://www.genetics.org/cgi/content/full/160/3/833

If you look down under the Materials and Methods or was it Methods and Material section (?) .. you will see TABLE 1.

Click there to see the infection rates and where the samples were gathered. Sorry but it isn't printing out here too well.

[Big Grin]
 
Posted by Tincup (Member # 5829) on :
 
Oh... and you can make this one, two or three pages, whatever is needed. I am just throwing out the facts for folks to pick and chose what might help them in their area.

I change the format to fit my needs.. depending on who is to get it.

[Big Grin]
 
Posted by dmbfan (Member # 11948) on :
 
Hey tincup. I'm working on some stuff for May and really like this fact sheet. I'd like to use some of the facts but don't know how to credit the resources. Did you compile this yourself or is i from another resource?

Do you have the original resources you quoted from (CDC, johns hopkins, etc)?

Thanks. I want to make to sure to give the appropriate credit
 
Posted by Tincup (Member # 5829) on :
 
Hey dmb...

Hope it can help. It is a bunch of facts put together from reading lots and lots. None of it is direct quotes.

Please feel free to use what you can. I am sorry I don't have a list of the references .... but if I had time I could easily find them for you. Just don't have the time now to research the stuff... so sorry!

You can find CDC type stuff- reported cases, etc on their sites. The Hopkins blood test study is from 2005 and authors are Auwaerter, Dumler, Aucott and others.

Lyme costs are gleaned from University of MD studies I believe.

If I felt decent I'd try to assist, but am not up to it right now.

It has been used in a number of states with the proper state related facts adjusted... so feel free to use what you can.

That's what it is for... and good to know you are busy already with May projects. Thumbs up!

[Big Grin]
 
Posted by dmbfan (Member # 11948) on :
 
Thanks! feel good.
 
Posted by Tincup (Member # 5829) on :
 
Thanks dmb.

Since the report was written last spring, you may want to update this first part of the paragraph by taking out the word "recently".

"CT Attorney General, Richard Blumenthal, recently concluded a lengthy investigation of the IDSA guidelines development process."

`````````````````````````````````````````````````

You may also want to mention that one organization (ILADS) submitted over 1600 pages of analysis and research studies and close to 300 pages of original analysis contesting (blowing them out of the water actually) the IDSA recommendations.... and many other submissions were made by others.

http://www.lymedisease.org/news/lymepolicywonk/114.html

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When I do this years fact sheet I may focus more on the IDSA guidelines and, because it is here in this neck of the woods, Hopkins and the Hopkins guideline authors.

And point out things like where the AAPS and others strongly disagree with the IDSA guidelines and they even state the tests they recommend ($$ connected to it) are "notoriously insensitive and unreliable" ...

And because of that, not being diagnosed early on, Lyme can lead to "severe chronic disability".

See this article talking about the AAPS-

"These Guidelines should be revised to recognize that the physician must retain full flexibility in the diagnosis and treatment of Lyme disease. Medical societies do not practice medicine; physicians do.

The mandate for specific laboratory confirmation is particularly objectionable, as testing for Lyme disease is notoriously insensitive and unreliable.

Patients who do not meet this criterion would often be denied treatment that could mitigate severe chronic disability. In some cases, long-term treatment is required. Physicians must be able to exercise their professional judgment concerning the best treatment for each individual patient, without restraint by one-size-fits-all Guidelines, which amount to mandates and prohibitions."

http://www.lymedisease.org/news/lymepolicywonk/115.html

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Actually... it might be good if I do an entire handout on just the IDSA guidelines and how bad they really are ... and include some of the conflicts of interest stuff... (not all that stuff or it would be 150 pages long-HA!)

And make it not just from a patient's point of view.. but the views of medical professionals nation wide, etc.

Oh...

You might want to leave a spot to add the results of the Review Panel which MAY be coming soon. I do believe the IDSA is having some additional problems that may have delayed the report.

My guess is they are stuck in a kind of "darned if we do and darned if we don't" situation.. while we wait and wait, with more and more getting sick each day.

But then that is only a guess on my part.

[Big Grin]
 


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