Wednesday, December 30, 2009
Lyme Disease Hats, Mugs, T-shirts : Twist of Lyme
Tuesday, December 29, 2009
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.
Wednesday, October 14, 2009
Lyme Podcast
For the first episode I interviewed my three sons. It is wonderful to look at life through the eyes of children. Not only is there honesty, but there is strength as well. For Episode 2, Part 2, I will interview my daughter and my wife/caregiver.
Ultimateky, the goal of the podcast is to interview others whose lives have been touched by this awful disease. Additionally, I will be speaking to disability lawyers, health care professionals, health dept. officials, etc. I also hope to interview those who have come out on the other side of this battle in order to see some light at the end of the tunnel.
You can listen to Episode 1 by searching Lyme Light in the podcast section of iTunes, or go directly to my feed site where I will also be posting show notes. Go to sdawson.podbean.com, scroll to the bottom and have a listen. You can also add a podcast player to your blog, facebook page, etc. When you done listening, please a comment. I love to hear your thoughts on the podcast as well as any suggestions for future shows. Thanks and come back often!
Scott Dawson
Monday, June 29, 2009
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
Sunday, June 28, 2009
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 Internation
“The fact is that infection with the bacterium that causes acute Lyme disease, Borrelia burgdorferi
T
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 knowledgeab
“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 knowledgeab
ILAD
Click HERE for the direct link to the story.
Thursday, June 11, 2009
The Lyme Disease Controversy
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 responsiven
Tuesday, May 26, 2009
Lyme Disease Tshirts : May is Lyme Disease Awareness Month
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!
Tuesday, May 12, 2009
Lyme Disease Tshirts
Sunday, May 10, 2009
How To Properly Remove A Tick
"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.)
Monday, May 4, 2009
May : Lyme Disease Awareness Month
"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!"
Monday, April 20, 2009
Wednesday, April 8, 2009
Lyme Disease Shirts
Sunday, April 5, 2009
Lyme Disease Tremors
Praying For Lymies
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
Friday, February 27, 2009
Lyme Disease Shirts
Sunday, February 22, 2009
Lyme Disease Awareness Apparel
Click HERE to be taken to the CafePress store to see all of the t-shirt designs.
Tuesday, February 17, 2009
It's Time For Another Lyme Lesson
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
Lyme Disease: The Battle Continues
- Lyme is the most prevalent vector-borne disease in the U.S. and it's found in more than 65 countries worldwide.
- According to the CDC only 10% of Lyme disease cases meeting the CDC criteria are reported each year. That means about 230,000 new cases of Lyme meeting that criteria occur each year in the U.S.
- Patients with Lyme disease often have co-infections with Babesia, Anaplasma, Bartonella, or other organisms, clouding the dignostic and treatment picture.
- Lyme disease, the great imitator, can be misdiagnosed as MS, ALS, Lupus, Chronic Fatigue, Fibromyalgia, Autism, Alzheimer's and Parkinson's.
- A bite from a tick that's infected with Lyme disease bacteria can lead to neurologic, cardiac, arthritic and psychiatric manifestations in humans.
- Children 5-14 are at the highest risk of acquiring Lyme disease; some studies show significant IQ drops in students with Lyme, reversed after treatment.
- Lab tests for Lyme disease are not reliable; you can test negative and still have the disease.
- Lyme disease can cross the placenta and cause birth defects or even death of the fetus.
- A 2006 published CDC animal study shows that trasmission of Borrelia burgdorferi (the bacterium that causes Lyme) through blood transfusion in mice is possible.
- A rash does not always occur with Lyme disease, and symptoms may occur days or months after a tick bite. (These 10 facts were taken from www.lymediseaseassociation.org)
We are excited about this new development and appreciate all your cards and prayers. When the drudgery of daily IV treatments loom over our heads we are thankful that we are sustained by a loving God who knows exactly where we are and what we need. I will add more info to Scott's Caring Bridge site in case you want more intimate details. I am including a photo of Scott so you can imagine how he spends his days. Please continue to pray for this amazing man. He works so hard at being a considerate husband and father and I am so thankful that God has extended his stay on this earth.