Delmarva Joins Nat Cap

May 10, 2016

HOORAY! GREAT JOB GUYS! MARYLAND LYME BILL NOW A LAW! In the State of Maryland, anyone going for a Lyme disease test will be given a disclosure stating that testing is not reliable and a negative test does not mean they don't have an active infection. We really believe this will make a big difference in the amount of suffering that occurs, because the citizens of Maryland - and their doctors - will be better informed. I believe it goes into effect in October, but I'm not positive about that.

http://wtop.com/…/new-maryland-law-bolsters-lyme-disease-t…/

Link Here- https://www.facebook.com/easternshoremdlyme/

RECOGNIZING TICK-BORNE DISEASES IN CHILDREN. Parents on Delmarva, please read this! Due to the controversies within the medical community, parents need to learn all they can about Lyme and other tick-borne diseases. Sadly, pediatricians in our area too often rely on unreliable Lyme disease testing which means that many children are suffering from undiagnosed infections. The Maryland House and Senate have recently passed a new law that will require those who go for a Lyme disease test be given a disclosure which states that testing for Lyme disease is unreliable and a negative test does not mean you don't have Lyme. A big red flag that your child or teen may have a tick-borne disease is repeat visits to the doctor or emergency room with no resolve to the health problem.

The concentration within our local medical community has also been on Lyme disease, when ticks are giving us so many other infections that are also going undiagnosed. Two regional tick studies found Bartonella to be more prevalent in our ticks than Lyme disease, but this very common infection is going unnoticed and testing for this bacteria is also notoriously unreliable. Parents be on the look out for marks on your child's skin that can resemble stretch marks or scratch marks as these can be an indication of a Bartonella infection (it is a amazing to learn of the number of children and teens with these types of markings that are such a common symptom of Bartonella, yet the medical community does not even recognize their significance). Babesia duncani (not Babesia microti like we read about in news reports) is also extremely prevalent in those with Lyme disease living on the Delmarva Peninsula. This is a malaria-like parasite that requires treatment with anti-malarial drugs. Many children and adults in this area are also testing positive for these tick-borne diseases: Mycoplasma, Erlichia, Rocky Mountain Spotted Fever, Brucella, and Tularemia. Our ticks are also giving us viruses, and they have also been found to carry nematodes, so intestinal parasites are a common diagnosis in area Lyme patients.

It can be very difficult for parents to determine who is right - their child who says they are really sick or the pediatrician and specialists who - because they are following old, outdated guidelines - say the child is "faking it" or "doesn't want to go to school" or is having "growing pains" or labels the child with behavioral issues or some other "condition". The guidelines being followed by most of the pediatricians and much of the medical community in our area (the IDSA guidelines) are so outdated that they have actually been removed from the National Guidelines Clearinghouse (the resource that doctors refer to when they need guidance). In the defense of our pediatricians and other doctors, they are receiving old, outdated information from the Centers For Disease Control so they can be just as confused as parents where tick-borne diseases are concerned.

Please recognize that the number of medical practitioners with a really good understanding of tick-borne diseases is very limited in our area and parents who suspect that a tick-borne disease(s) could be the cause of their child's illness should reach out to their local Lyme disease association as we tend to have the best resources to help parents weed through the conflicting information. Below is a link to an article which provides a good overall view of some of the symptoms that should trigger a parent to question whether their child's health or behavioral issues may be caused by tick-borne diseases. Also, with a little more research, parents will find many scientific, peer-reviewed studies linking autism to chronic infection - often tick-borne diseases.

Another question mothers need to honestly ask themselves is what their health was like when they were pregnant, and could their child's health issues - especially when they develop in early childhood - be the result of a congenital transmission of an infectious organism? A few of the tick-borne diseases have been proven to be passed from mother to baby.

Often times we hear of children and teens with Lyme and other tick-borne diseases testing positive for Epstein Barr virus. A positive test for this virus (also known as "Mono") may be an indicator to look for another underlying infectious process.

Also, realize that depression, anxiety, OCD, ADHD, anger issues, reduced learning capacity, and other changes in behavioral or cognitive functions can be a strong indicator of an infection, and these issues seem to be coming to the forefront of symptoms of tick-borne diseases in our area.

For a good, brief article with further resources, please visit: https://www.lymedisease.org/lyme-bas…/lyme-disease/children/

(copy and paste the URL address)

One way the savvy parent can research medical journal articles to see if your child's present diagnosis could be linked to a tick-borne disease is to go to "scholar.google.com" and in the search bar type in "______[name of child's diagnosis, such as gastritis or dermatitis or ADHD or OCD or arthritis] AND ______ [name of organism, such as Borrelia for Lyme disease or Bartonella or Babesia or Mycoplasma]. This will bring up case studies and peer-reviewed scientific articles.

If you need more information, please send us a message or e-mail us at easternshoremdlyme@yahoo.com or call us and leave a message at 410-749-LYME.

LikeShow more reactionsCommentShare

HEARING ON DELAWARE LYME BILL CANCELLED FOR TOMORROW. The Delaware Senate Natural Resources Committee has removed the Delaware Lyme bill from its agenda tormorrow, May 4th. We will let you know when the committee decides to hold its hearing on the bill. Thank you!

A CALL TO ACTION - LYME LEGISLATION. Next week the Maryland House's health committee will hear testimony on a Bill that calls for medical professionals to provide a written disclosure to any patient for whom a blood test for Lyme disease is ordered. The disclosure will inform the patient that testing for Lyme disease is not reliable and a negative test does not mean you do not have an active case of Lyme disease. A similar bill was passed in Virginia and a few other states.

Patients need to know that testing for Lyme disease is not accurate and if they have the symptoms, they need to seek help from a medical professional who understands the limitations of these unreliable tests. Through our educational efforts and our own personal stories, we have met many, many people living in Maryland who thought they did not have Lyme disease, because they had a negative test, when they really did have an active case. Relying on those tests resulted in months to years - 16 years for me - of suffering needlessly and being mis-diagnosed with many different types of diseases, conditions and psychiatric problems.

PLEASE LET YOUR VOICES BE HEARD IMMEDIATELY by registering at Voter Voice using the link below. This process takes all the work out of it for you. By providing your address, the system will automatically send a letter to your appropriate Senator and Representative showing your support of the House and Senate bills. It's so easy and only TAKES LESS THAN A MINUTE of your time to help make a difference in the lives of so many people living in Maryland.

I was told for 16 years I had fibromyalgia, when it was really tick-borne diseases the whole time! I believed my doctor, because I had two negative Lyme tests. Little did I know that the tests are very inaccurate. I know that if I had been given a disclosure telling me that the tests were unreliable, that I would have done more research and not accepted the diagnosis of fibromyalgia for so very long.

TIME IS OF THE ESSENCE! The House hears the bill this coming week and the Senate hears a similar version on March 17th. Your representatives need to know how to vote.

The Lyme Disease Association of Delmarva, Inc. is an independent non-profit organization and we are not represented by any other person or organization.

https://www.votervoice.net/NATCAPLY…/campaigns/44846/respond

VERY IMPORTANT. PLEASE READ. An important Bill concerning Lyme disease was introduced into the Maryland General Assembly this past January which is of importance to Lyme patients in the State. Maryland House Bill 399 proposes that medical practitioners be required to provide their patients with a notice that states that Lyme disease testing is not reliable, at the time tests for the disease are ordered.

IT IS IMPORTANT THAT LYME PATIENTS WITHIN THE STATE TAKE THE TIME TO READ THIS BILL, DECIDE IF THEY ARE IN SUPPORT OF IT, AND THEN TAKE ACTION TO LET THEIR REPRESENTATIVES KNOW THEY SUPPORT THIS LEGISLATION.

We believe this notice could be an important tool to prevent months or years of suffering. If more people were informed that the tests are not reliable, then they may do more research, seek other opinions, reach out to local Lyme disease associations, or take other actions to better advocate for themselves. We have heard from many, many people through the years, who said they had a negative Lyme disease test so they thought they did not have the disease. Most often, this led to years of ill health while they and their doctors continued to look for answers to their health problems. We have also talked with many physicians who are not aware that the tests for Lyme disease are not reliable.

Specifically, the current text of the Bill reads as follows:

“(A) A HEALTH CARE PROVIDER LICENSED IN THE STATE SHALL PROVIDE THE FOLLOWING NOTICE TO EACH PATIENT FOR WHOM THE HEALTH CARE PROVIDER ORDERS A LABORATORY TEST FOR THE PRESENCE OF LYME DISEASE:

“YOUR HEALTH CARE PROVIDER HAS ORDERED A LABORATORY TEST FOR THE PRESENCE OF LYME DISEASE FOR YOU. CURRENT LABORATORY TESTING FOR LYME CAN BE PROBLEMATIC AND STANDARD LABORATORY TESTS OFTEN RESULT IN FALSE NEGATIVE AND FALSE POSITIVE RESULTS AND, IF DONE TOO EARLY, YOU MAY NOT HAVE PRODUCED ENOUGH ANTIBODIES TO BE CONSIDERED POSITIVE BECAUSE YOUR IMMUNE RESPONSE REQUIRES TIME TO DEVELOP ANTIBODIES. IF YOU ARE TESTED FOR LYME DISEASE AND THE RESULTS ARE NEGATIVE, THIS DOES NOT NECESSARILY MEAN YOU DO NOT HAVE LYME DISEASE. IF YOU CONTINUE TO EXPERIENCE UNEXPLAINED SYMPTOMS, YOU SHOULD CONTACT YOUR HEALTH CARE PROVIDER AND INQUIRE ABOUT THE APPROPRIATENESS OF RETESTING OR ADDITIONAL TREATMENT.”.

(B) A HEALTH CARE PROVIDER WHO PROVIDES THE NOTICE REQUIRED BY 11 SUBSECTION (A) OF THIS SECTION SHALL BE IMMUNE FROM CIVIL LIABILITY FOR 1PROVIDING THE NOTICE UNLESS THE PHYSICIAN ACTS WITH GROSS NEGLIGENCE OR WILLFUL MISCONDUCT.

AND BE IT FURTHER ENACTED, That this Act shall take effect 15 October 1, 2016.”

Similar bills have been adopted in about nine states. The Lyme Disease Association of Delmarva, Inc. supports the bill with its current wording. We recognize that bills can be changed as they go through the legislative process, and we will continue to monitor the bill’s status.

There are only a small number of organized Lyme advocacy groups in the State of Maryland and most are either independent, such as the Lyme Disease Association of Delmarva, Inc., or they are chapters of a larger group. There is no Director of Maryland Lyme Groups authorized to speak for the LDAD, Inc. There is no governing body or person who coordinates the Lyme groups serving in Maryland.

A united front will be needed to make legislative advances that benefit Lyme patients. We will need all Lyme patients who are in support of this legislation to speak out and let your voices be heard. In a few days, a tool called Voter Voice will be made available to us that will make it very easy for all supporters to take action. When it is available, you will only have to click the link, enter your name and address, and a letter supporting the legislation will be automatically sent to your appropriate House and Senate representatives. In the meantime, please give this legislation some thought and decide if you or others you know would have benefitted by learning early on that Lyme disease testing is not reliable, and a negative test does not mean the person does not have an active Lyme infection.

Thank you!

LikeShow more reactionsCommentShare