Janet Jensen‎ to Nat Cap Lyme Chapter - Harford Lyme Advocates

February 25 at 7:45am ·

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.

WRONG- There are many advocates and support groups and volunteer advocates in Maryland and there has been for decades. They chose not to partner with the Nat Cap group years before Janet Jensen appeared on the scene. Source... https://sites.google.com/site/marylandlyme/md-support-groups

https://sites.google.com/site/marylandlyme/md-support-groups/after-the-bite

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.

WRONG- For legislative purposes I have been coordinating with the groups, patients, advocates and doctors since 1999.

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!

Link here

https://www.facebook.com/Nat-Cap-Lyme-Chapter-Harford-Lyme-Advocates-484427501632693/

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