Lyme Disease Podcast: Lyme Light Episode 2

The newest episode of our Lyme Light Podcast is available for free HERE! Our Lyme Light Podcast is meant to encourage and enlighten those suffering with Lyme Disease and to offer support to their friends, families and caregivers.

Finally, after a month and a half I have finished Episode 2, Part 2 of the Lyme Light Podcast. In this episode i finish up my interviews with my family. In episode 1 you met my three boys, now in episode 2 you meet my elusive 12 year old daughter and my wife, who is my primary caregiver. This episode is a little longer than the first one but I think you’ll enjoy the conversation my wife and I have. Not only is she a bonus mom (step mom) to my four children and my caregiver, but now her mother lives with us and has added a new dimension to our daily life. My wife, Dawnua, is an incredibly strong and inspiring person. I know you’ll be encouraged by what she has to say. We’d love to know what you think about this podcast. It seems one episode per week may have been an over-ambitious goal. But if you find this podcast helpful and informative, we’d love to know! Enjoy.

Visit our Lyme Light Podcast at http://sdawson.podbean.com/ and click on the Listen Now button to hear this episode.

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!"

Lyme Disease Clothing For Your Pet? Yes!

Lyme Disease Tremors

Scott had a really bad day last month and I wanted to document some of his symptoms but have not been successful in transferring the video from our nice camera. This video was taken from my cell phone...sorry it is so blurry. I just wanted you to see some of what Scott has to deal with because of Lyme Disease. This is what happens when all of his cells are misfiring. He was just trying to hold a pen but his hand kept shaking and jumping. He had problems eating lunch because he could not get the food into his mouth...his hand kept jumping and shaking. Please continue to pray for his health. Please educate those around you on what Lyme Disease is, Where you can get it and What needs to be done about it. More on this later....

Praying For Lymies

I found some new Lyme blogs tonight and wanted to share one with you.

At Praying For Lymies they ask you to pray for their Lymie of the Week. This is being hosted and monitored by Jennifer from Living the Lyme Life and also assisted by Melody from Waiting Quietly. You have the opportunity to pray for the Lymie by emailing your prayer and the girls will add the post to the site.

I thought this was such a great idea that I wanted to plug it on our family blog. We have had hundreds of people pray us thru these last 2 years and we are eternally grateful. God has sustained us by the generosity of His people. Please take a minute to visit the blog and pray for the Lymie of the Week: Amy

Lyme Disease Shirts

We have had a great response to our new Lyme Disease Awareness store and know that you are proudly displaying your support for other Lymies. As we struggle with this disease more design ideas pop into my head, so check back often for new items. You can purchase these itmes here: www.cafepress.com/LymiesUnite

Lyme Disease Awareness Apparel

Take a look at our CafePress store full of Lyme Disease Awareness apparel. Click on each design to be taken to the CafePress page so you can look at all the options. All proceeds go towards the cost of Scott's medical care. It costs about $1000 a DAY to treat Scott's Lyme Disease and we are always looking for ways to pay for his treatment. Thank you for your help!
Click HERE to be taken to the CafePress store to see all of the t-shirt designs.

It's Time For Another Lyme Lesson

Because this illness is commonly misunderstood, us lymies are big on educating those around us. We become Lyme patient advocates and strongly believe in EVERYONE being tested. Here are some fun facts for you to review...

1. Fewer than half of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture-proven Lyme borrelial infection.

2. Fewer than half of patients with Lyme disease recall any rash. Although the bull's eye presentation is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection.

3. There has never in the history of this illness been one study that proves even in the simplest way that 30 days of antibiotic treatment cures Lyme disease. However, there is a plethora of documentation in the US and European medical literature demonstrating histologically and in culture that short courses of antibiotic treatment fail to eradicate the Lyme spirochete.

4. An uncomplicated case of chronic Lyme disease requires an average of 6-12 months of high-dose antibiotic therapy. The return of symptoms and evidence of the continued presence of Borrelia burgdorferi indicates the need for further treatment. (Imagine how long a COMPLICATED case, with co-infections needs to be treated?)

5. Many patients with Lyme disease require treatment for 1-4 years, or until the patient is symptom free. Relapses occur and maintenance antibiotics may be required. There are no tests available to assure us whether the organism is eradicated or the patient is cured.

6. There are 5 subspecies of Borrelia burgdorferi, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to Borrelia burgdorferi's antigenic variability and its various antibiotic resistances.

7. Lyme disease is the latest great imitator and should be considered in the differential diagnosis of MS, ALS, seizure and other neurological conditions, as well as arthritis, CFS, gulf war syndrome, ADHD, hypochondriasis, fibromyalgia, somatization disorder and patients with various difficult-to-diagnose multi-system syndromes.

8. And last but not least....a quick list of symptoms. Do you see yourself in this list?
Symptomatic presentations of Lyme disease include:

• Fatigue
• Low grade fevers, "hot flashes" or chills
• Night sweats
• Sore throat
• Swollen glands
• Stiff neck
• Migrating arthralgias, stiffness and frank arthritis
• Myalgia
• Chest pain and palpitations
• Abdominal pain, nausea
• Diarrhea
• Sleep disturbance
• Poor concentration and memory loss
• Irritability and mood swings
• Depression
• Back pain
• Blurred vision and eye pain
• Jaw pain
• Testicular/pelvic pain
• Tinnitus
• Vertigo
• Cranial nerve disturbance (facial numbness, pain, tingling, palsy or optic neuritis)
• Headaches
• Lightheadedness
• Dizziness

This is a small list of the various symptoms that Lyme disease can cause. You can find a more complete list HERE. The info. in this post came from Turn The Corner Foundation. You can also find info. HERE on the FIRST test that you would need to have done if you are concerned about Lyme disease. Take a few minutes and do some research. This debilitating illness is real and it is everywhere.

Lyme Disease Sucks

Welcome to our Lyme Disease blog. My husband of 3.5 years has been sick on and off since he was very young. For 10 years he suffered numerous neurological symptoms and was misdiagnosed with MS and later treated for Parkinsons. In 1997 he had all the classic symptoms; bite, rash, bell's palsy, severe arthritic pain, dizziness and more. He endured 6 spinal tap attempts, CT scans, blood tests, neuro testing and more only to be told it might be MS. After a severe injury to his arm in the summer of 2005 his health steadily declined until he was bed ridden in December 2005. We got married in August of 2005 and found out he had Lyme disease in March 2006. We had a small business that he could no longer help me with and we began the longest, hardest fight of our lives. We have suffered great material loss because of this illness and are trying to rebuild our lives.

I am a designer by trade and am trying to meet our financial needs on my own. My husband has not been able to work since December 2005. It has been an uphill battle and we still have 9 more months to wait for our disability hearing. We have 4 children and suspect that one of them may also have Lyme disease. We are not quite ready for this as my husband is currently in IV treatments 6 hours a day, 7 days a week. His medical bills are astronomical as he "spends" $1000 a day at the clinic. Thankfully, we DO have insurance but it only pays for a portion of the bills. We are struggling to pay for his prescription meds (until our deductible is met) while affording our rent, groceries and utilities. If you are able to help us with his Lyme Disease treatment fund we would GREATLY appreciate it.

I will be adding a link to our Cafe Press website with our Lyme Disease awareness items that are for sale. We hope you will help bring awareness to this horrible disease by wearing our products.