Lyme Disease Shirts: Ignorance is a choice...

It seems that everywhere we go, we run into a wall of deliberate ignorance...and I am growing weary. It is time for a change. It is time for compassion and understanding. It is time for you, our doctors, to admit that you can't fit Lyme Disease into a pretty little box and call it good. It is a complex, multi-systemic bacterial infection that wreaks havoc on entire families and communities. It is time for you to take a stand and start saving our lives.

You can buy this new LYME DISEASE SHIRT online at www.cafepress.com/lymiesunite

Long Term Antibiotics for Lyme Disease

Bethesda, MD, June 21, 2009 - Governor M. Jodi Rell today announced she has signed a bill allowing doctors to prescribe long-term antibiotics for a patient clinically diagnosed with Lyme disease without fear of sanction for state health regulators. The International Lyme and Associated Diseases Society (ILADS (www.ILADS.org)) applaud Connecticut legislature for unanimously passing the bill and the governor for signing a bill that will protect physicians who treat Lyme disease.

FOR IMMEDIATE RELEASE

“The fact is that infection with the bacterium that causes acute Lyme disease, Borrelia burgdorferi, may also cause a chronic, complex, and often life altering disease that can be highly difficult to diagnose. Reliable diagnostic tests are not yet available,” says Daniel J. Cameron, MD, MPH, president of ILADS, “Chronic Lyme disease patients may face a long hard fight to wellness.”

The bill addresses acute and chronic presentations of Lyme disease and includes a clinical diagnosis of Lyme disease as determined by a physician “…that is based on knowledge obtained through the medical history and physical examination alone, or in conjunction with the testing that provides supportive data for such clinical diagnosis.”

Despite all the progress in raising public awareness of Lyme disease since its discovery in state in the state of Connecticut in the 1970s, the numbers and complexity of Lyme disease continue to grow. The bill offers hope that more physicians knowledgeable about Lyme disease will be encouraged to practice within the State of Connecticut.”

“One of the burdens of Lyme disease, finding treatment, will be lifted from their shoulders, as this law offers hope to residents that more physicians who are knowledgeable about Lyme disease will be encouraged to practice within the State of Connecticut, according to Maggie Shaw, Newtown Lyme Disease Task Force, a patient leader in the Connecticut effort.

ILADS www.ilads.org is a nonprofit, international, multidisciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of tick-borne diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.

Media contact: Barbara Buchman Lymdocs@aol.com

Click HERE for the direct link to the story.

The Lyme Disease Controversy

The CDC clinical criteria for Lyme Disease which exist for the purpose of monitoring the rate of Lyme disease nationally are quite narrowly defined in order to ensure a high degree of specificity in the diagnosis. These criteria are mainly useful for the early stages and rheumatological presentations of Lyme Disease,such as when a patient appears with an erythema migrans rash, arthritis, a Bell's palsy, or early central neurologic Lyme disease (meningitis or encephalitis). The CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease. For example, the most common manifestation of late neurologic Lyme Disease is cognitive dysfunction (often referred to as "encephalopathy"). A patient who presents with new onset encephalopathy and a positive blood test for Lyme Disease would not be considered by the CDC to be a case of Lyme disease. Although the CDC recognizes that Lyme encephalopathy exists, encephalopathy is not part of the "surveillance case definition". Hence, physicians who rely on the narrow surveillance case criteria of the CDC for clinical diagnosis will fail to diagnose some patients who in fact do have Lyme disease; in these cases, the patient's treatment will either not occur or be delayed. Such delay in treatment may result in an acute treatable illness becoming a chronic less responsive one.

Other physicians who use a broader more inclusive set of clinical criteria for the diagnosis of Lyme disease will make the diagnosis of Lyme Disease and initiate treatment. The latter group of doctors, by treating some patients for "probable Lyme Disease", will make use of antibiotic responsiveness to confirm their diagnostic impression. These physicians, by erring on the side of not letting a patient with probable Lyme Disease go untreated, will help many patients who otherwise would not get treatment; undoubtedly, however, because of the inclusiveness of their diagnostic approach, these physicians will also treat some patients with antibiotics who do not have Lyme Disease. These physicians would argue that the serious consequences for physical, cognitive, and functional disability associated with chronic Lyme Disease outweigh the risks of antibiotic therapy.

Both sets of doctors are practicing medicine in a reasonable fashion based on the application of certain diagnostic principles, although the therapeutic approaches differ considerably stemming from the narrow vs broad criteria for diagnosis. This is the essence of the medical controversy surrounding chronic Lyme disease. Until medical doctors have a test that definitelyy identifies the presence or absence of infection (and such a test does not yet exist), the controversy about the diagnosis and treatment of chronic Lyme Disease will continue. (posted by my friend K.N.)

Lyme Disease Tshirts : May is Lyme Disease Awareness Month

May is almost over and I haven't done all that I felt I needed to do to help spread the word about Lyme Disease. I never feel like I am doing enough but when you are dealing with LD sometimes it is all you can do just to survive, let alone advocate for others. My husband and I feel like LD is our new religion because it has permeated every aspect of our lives...we can't get away from it and we have become Lyme Awareness Evangelists.... Everywhere we go we end up talking about Lyme...whether we are answering questions about Scott's cane, PICC or why he isn't currently driving...Lyme Disease is everywhere and we are just trying to survive.

Scott has been in IV treatment for the past 17 months and we are exhausted. Every day is a struggle for him because no one in our local medical community recognized the CLASSIC LYME SYMPTOMS back in 1997. NO ONE should have to suffer like this. Something needs to be done. Doctors need to open their hearts and minds to the possibility that they DON'T KNOW EVERYTHING and be willing to listen and learn about this debilitating disease. If you haven't bought your Lyme Disease Awareness products...NOW IS THE TIME!

Lyme Disease Tshirts

I have created a line of Lyme Disease Clothing in order to help pay for some of my husband's Lyme Disease treatment. He is currently fighting the fight of his life and any sales of our Lyme Disease T-shirts help us stay afloat. May is Lyme Disease Awareness month so it's the perfect time to buy a Lyme Disease Tshirt. Click on the shirt of your choice to be taken to our CafePress store where you can choose your size and color. We have 53 items currently in stock.

How To Properly Remove A Tick

I found out this weekend that there are many in the medical field who DO NOT KNOW how to remove a tick. There is a huge population of nurses who know very little about removing a tick and even less about Lyme Disease symptoms. Since May is Lyme Disease Awareness month, what better way to promote awareness than to teach you how to properly remove a tick...and YES, it does make a difference.

"The recommended way to remove an attached tick has changed in recent years. Researchers have found that Lyme disease germs are usually in the tick’s gut rather than in its mouth. Therefore, getting all the mouthparts out of the skin is not considered as important as keeping the tick from injecting more germs from its gut. After a tick has been feeding for a few hours, it regurgitates germs from its gut into the bite site. Thus, it can take several hours for a tick to transmit Lyme disease. Remove ticks promptly. Some ticks have germs in their saliva and can transmit Lyme and other diseases as soon as they bite.

The old methods of burning the tick with a hot match, or covering it with nail polish, Alcohol, lighter fluid, or other chemicals, can cause the tick to vomit more lyme bacteria into the bite site. Using fingers or blunt tweezers to remove it can squeeze the tick’s abdomen and also inject more bacteria into a person. A research study found that all these methods make a person more likely to contract lyme disease. Remove ticks with fine-pointed tweezers, available at some drug stores, or a tick remover tool, available on the internet or from the Lyme Association of Greater Kansas City. It is difficult to remove the tiny nymphs with tweezers without squeezing the tick’s body. Nymphs cause most cases of lyme disease.

The safest way to remove a tick is by sliding something under it, such as a credit card (which doesn’t always work) or a tick remover. Grasp the tick as close to the mouth (the point of attachment) as possible and pull it straight out slowly, allowing the tick about a minute or 2 to release itself. It doesn’t need to be turned or twisted out. If mouth parts are left in the skin, they can be removed with a sterile needle or by a doctor. If they are not removed, they will work their way out of the body in a few days, but may cause itching. If you are camping and must remove a tick by hand, use a leaf or tissue to avoid touching the tick with your bare hands. Don’t squeeze the gut. After removing a tick, disinfect the bite site and tool, and wash your hands with antibacterial soap.

A camping first aid kit should include a tick removal tool, a needle, rubbing alcohol, cotton balls, antibacterial soap, and a container or small zipper bag to save a tick for testing. You may also want tape to seal the container securely. after removing a tick, call the doctor. Some physicians prescribe antibiotics for tick bites; others wait to see if disease symptoms develop. Ilads (international lyme and associated diseases society) doctors recommend a minimum of 6 weeks of antibiotic treatment for an em rash or other early symptoms of LYME disease, because LYME can become chronic and debilitating with shorter treatment courses. (see www.Ilads.org) .

Lyme blood tests within a few days of a tick bite are not useful, since it usually takes a person several weeks to develop antibodies. Diagnosis is based on signs, symptoms, and exposure to ticks.

The Lyme Association of greater Kansas City sells a tick removal kit in a plastic pill bottle. It contains a tick remover tool, instructions, 2 alcohol wipes, a tick identification card, and a tiny zipper bag to save the tick for testing. People have told us they like the tick remover tool because it is easier than tweezers for removing tiny young nymphal ticks safely and is also good for removing adult ticks. It also works well for removing ticks from pets. It can be ordered by sending a check for $5 made out to: “LYME ASSOCIATION” AND MAILED TO:
LYME ASSOCIATION, P.O. BOX 25853, OVERLAND PARK, KS 66225
WHAT TO DO WITH THE TICK
AFTER REMOVAL, YOU MAY WANT TO SAVE THE TICK FOR IDENTIFICATION AND TESTING. CERTAIN TICKS ARE MORE LIKELY TO CARRY CERTAIN DISEASES. BLACK-LEGGED (DEER) AND LONE STAR TICKS CARRY LYME DISEASE IN THE CENTRAL AND SOUTHERN STATES. TICK TESTS FOR DISEASES, ALTHOUGH NOT 100% RELIABLE, ARE MORE ACCURATE THAN HUMAN TESTS, WHICH ARE NOT VERY RELIABLE, ESPECIALLY IN THE CASE OF LYME DISEASE. HOWEVER, A TICK CAN SOMETIMES HAVE A NEGATIVE TEST AND STILL BE CARRYING LYME DISEASE. A POSITIVE TEST PROBABLY INDICATES THAT THE TICK IS CARRYING THE DISEASE, BUT IT DOESN’T ALWAYS MEAN THAT THE TICK TRANSMITTED THE DISEASE. SOMETIMES AN INFECTED TICK THAT IS ATTACHED FOR ONLY A SHORT TIME DOES NOT TRANSMIT LYME
BACTERIA.

WHEN YOU REMOVE A TICK, USE A MAGNIFYING GLASS TO LOOK AT THE COLOR OF THE LEGS. IF THE LEGS ARE BLACK, IT IS PROBABLY A DEER TICK. IF THEY ARE RED OR ORANGE, IT IS PROBABLY A LONE STAR TICK. BOTH CAN TRANSMIT LYME DISEASE, BUT LONE STAR TICKS OFTEN CARRY A STRAIN THAT IS MORE LIKELY TO PRODUCE NEGATIVE ANTIBODY TESTS.

TICKS MAY BE SENT TO BE TESTED FOR DISEASES TO: IGENEX LABS, PALO ALTO, CA (800) 832-3200; MDI, MT. LAUREL, N.J. (877) 269-0090; OR NJ LABS, NEW BRUNSWICK, NJ (732) 249-0148. CALL FOR MAILING INSTRUCTIONS. THEY PREFER LIVE TICKS BUT WILL TEST DEAD TICKS. DON’T KILL IT WITH ALCOHOL, SMASH IT, OR BURN IT IF YOU WANT IT TESTED. THE TICK MUST BE KEPT MOIST IN THE CONTAINER WITH A FEW BLADES OF GRASS OR A COTTON BALL DAMPENED WITH WATER. AS OF MARCH, 2004, THE COST OF TICK TESTING IS:

IGENEX $55 FOR LYME, EHRLICHIA, BABESIA, OR BARTONELLA ($220 IF YOU WANT ALL 4). IF BITTEN BY SEVERAL TICKS, THEY TEST UP TO 20 TICKS FOR THE PRICE OF ONE.

MDI $155 FOR LYME OR EHRLICHIA, $127 FOR BABESIA; BARTONELLA TESTING IS ALSO AVAILABLE.

NJ LABS $60 FOR LYME, OR $175 IF THE TICK HAS BEEN DEAD OVER 2 WEEKS OR KILLED WITH ALCOHOL. THEY DON’T TEST FOR CO-INFECTIONS, JUST LYME.

IF YOU PREFER TO DISPOSE OF THE TICK, YOU CAN KILL IT BY PUTTING IT IN A CONTAINER AND THEN ADDING A COTTON BALL SOAKED IN RUBBING ALCOHOL. YOU CAN THEN DISPOSE OF THE DEAD TICK IN THE TRASH. TICKS DON’T DROWN. FLUSHING IT DOWN THE TOILET WILL NOT KILL IT."

(You can find this article and more at the Lyme Association of Greater Kansas City.)

Fight Lyme Disease...Ignorance Is Contagious!

May : Lyme Disease Awareness Month

It's that time of year again for Lyme Disease Awareness. For those of us affected by Lyme Disease EVERY month is LD Awareness Month but we take this month to push, promote, teach, beg and plead for changes in the medical community concerning Lyme. At this time last year I had the privilege of receiving a proclamation from our small town Mayor officially declaring May as Lyme Disease Awareness month in Ottawa, Ks. There are many sick people in Ottawa who are being refused treatment based on the inadequate IDSA guidelines. Those people will continue to deteriorate until the medical community chooses to open their minds to this devastating disease. Unfortunately, no one seems to care about Lyme Disease unless they are directly affected by it. If you haven't told someone about how LD has changed your life, this is the perfect month to SOUND THE ALARM!

"Thank You Mayor Ramsey. On behalf of the Lyme Disease Association of Franklin County and the Lyme Wellness Center of Kansas we want to thank you for this proclamation declaring May as Lyme Disease Awareness Month.

Lyme Disease is a bacterial infection caused by the spirochete Borrelia Burgdorferi. It is a systemic infection that can affect almost any part of the body. According to the International Lyme and Associated Diseases Society "Lyme disease is the latest great imitator and should be considered in the differential diagnosis of MS, ALS, seizure and other neurologic conditions, as well as arthritis, Chronic Fatigue Syndrom, Gulf war syndrome, ADHD, fibromyalgia and other various difficult-to-diagnose multi-system syndromes." Not only can Lyme disease be incorrectly diagnosed as other conditions, it can also occur concurrently with other conditions or be diagnosed incorrectly.

With the declaration that May is Lyme Disease Awareness Month it opens the door for education and prevention here in Ottawa. For those of us in the Lyme Disease Community we are painfully aware of the physical, neurological, emotional, spiritual and financial complications that are caused by this complex bacterial infection. My husband Scott was diagnosed with late stage Lyme Disease in March of 2006. With two years of research and treatment under our belts, we have become Lyme Advocates. We meet people every day who are being told by Kansas doctors that Lyme Disease does not exist in the Midwest, let alone KS. They are being turned away and refused medical treatment based on inadequate and outdated information.

With the recent announcement of a settlement in a landmark antitrust investigation into the Lyme treatment guidelines of the Infectious Diseases Society of America we know the tide is turning. Because the IDSA guidelines have been treated as mandatory within the medical community, many patients have suffered and been refused medical care. This opportunity to include previously suppressed scientific viewpoints and evidence will change how we are diagnosed and treated for Chronic Lyme Disease. The agreement by the IDSA to reassess, update and revise the guidelines will undoubtedly make an impact in Ottawa, KS. It is our hope that this proclamation will be the first step in educating our medical community and will bring about a greater awareness of this hidden epidemic in Ottawa residents.

If you have questions about the symptoms and treatment of Lyme Disease there are several local groups who are willing to listen and help. The Lyme Disease Association of Franklin County meets at the Paper Haven on the 4th Monday of each month from 7-8pm. The Lyme Association of Greater Kansas City meets the 4th Thursday of each month at 6:30 pm at St. Jo Hospital and they provide a hotline at 913-438-LYME.

As a founding member of the Lyme Disease Association of Franklin County, as a lyme advocate and the wife of a chronically ill Lyme patient I want to say Thank you to the City of Ottawa and to Mayor Gene Ramsey for making MAY Lyme Disease Awareness Month and for giving us an opportunity to help others in our community!"