The spectacular Second Annual Karen’s Lyme Story (KLS) New Year’s Eve Gala Celebration is on!
THEME: Diamonds and Denim
DATE: December 31, 2014
TIME: 8 p.m.
PLACE: Avon Lea Farm — the exquisite National and Philadelphia Historic Register Landmark
ADDRESS: 1779 Pickering Road, Phoenixville, PA 19460
Why Diamonds and Denim?
The perfect blend of glitz, glam, chic and casual, with Diamonds and Denim, the choice is yours! Dress up or down or do a combination of both.
Women, wear your most ostentatious jewels and party dress or mix it with some form of denim. We encourage you to have fun and be creative.
Men, wear denim only or feel free to combine your best blazer with your favorite pair of jeans. Be bold and don them with a pair of rhinestone cuff links!
NO CORNERS HAVE BEEN CUT to provide you with an unforgettable night of celebration – all inside the massive, magnificent, Avon Lea Farm!
Need more details? Click here.
Ready to join the party? Purchase tickets here.
Want to ask questions? Click here.
We look forward to seeing you at Avon Lea Farm for the KLS “Diamonds and Denim” New Year’s Eve Gala 2015!
Good News for Lyme Disease Sufferers in the State of New York
Gov. Andrew Cuomo signed a bill late Wednesday that prohibits the state Office of Professional Medical Conduct from investigating a licensed physician based solely upon the recommendation or provision of a treatment that is not universally accepted by the medical profession.
Click on Poughkeepsie Journal to read full article.
Women’s NBA star, Della Donna, to serve as first national Lyme Research Alliance (LRA) Ambassador
Chicago Sky forward, Elena Delle Donne, and Women’s NBA’s 2013 rookie of the year, has dealt with Lyme disease since 2008. It caused her to miss 18 games on three separate occasions during her college years at Delaware. After seemingly having it under control, she had to sit out 17 games for the Chicago Sky this season.
After going through this, Della Donne decided she wanted to do something to help the Lyme disease community. She will now serve as the first national ambassador to help promote awareness of the tick-borne disease.”It’s really special because Lyme disease has become part of my life now,” Delle Donne said in a phone interview. “I learned that I’ll wake up every day and deal with it. There are good days and bad days. If I can be a voice and reach out to people and make them aware of the disease it will help.”
Read more about Della Donna’s Story.
Lyme bacteria are known to form biofilms in order to protect themselves from attack. This is a great easy-to-understand video explaining how these biofilms work.
It is important to treat with a doctor who understands biofilms and knows how to prevent the bacteria from evading treatment by forming these clusters of biofilms. The more you can do to understand how Lyme bacteria works, the better equipped you will be to find a knowledgable doctor to treat you. One of the first questions you want to ask is, “Have you been ILADS trained?”
If your doctor does not know what this means, then make sure to ask him some follow-up questions before deciding to treat with him. Ask him whether or not he believes that there can be a more chronic form of Lyme disease and whether he thinks he is skilled in treating this form.
In addition, ask him if he is familiar with the different forms of the Lyme bacteria and if he uses the different antibiotics that kill each of these forms, including the biofilms. Busting open these biofilms is key to getting and staying well!
Now that my body has gotten a break from the IV antibiotics and I am feeling a bit better, I have been enjoying being able to look outward at the beauty all around me. This weekend I was fortunate enough to go to my friend’s house in Allentown, PA. He has an exquisite piece of property with absolutely no houses behind him but rather fields, trees and sky for as far as you can see.
I stood out on his deck and marveled at all the magnificent Autumn colors around me–green, yellow, brown, orange, red. I never noticed these colors the last few years because, quite frankly, I was too sick to care. It was such a special moment being able to stand out there being fully there to marvel at the beauty surrounding me.
Tomorrow I start an intense regimen of antibiotics so the moment I had at my friend’s looking upward and outward without any pain, fuzziness or fatigue may not last. But I am thankful nonetheless–even if it is just for a moment.
Now that I have finished the IV protocol, I am being transitioned to the next phase of my treatment, which is a pretty potent oral antibiotic regimen. My doctor says that he has gotten enough of the infection out so that I can be transitioned to the oral-only protocol but that the infection is not to the point where treatment can be stopped. He says I will be taking these for another year to year-and-a-half. He explained that we need to keep whittling away at the bacteria that go into hiding so that they can never build up enough to cause me problems in the future. I only take the antibiotics on the days that the bacteria are actively replicating. Thus, I get 18 days off a month. I will do this for 3 months at a time and then go back to see him after each cycle so he can keep a watch on me.
I have started my new regimen and notice that I feel fairly good during the time that I am not taking the antibiotics but feel fatigued, achy and cloudy on the days that I do take them. Although this is a nuisance, I am grateful for how far I have come as well as for the fact that the antibiotics are helping to clear out the infection.
The overwhelming fatigue where I pretty much spent the whole day in bed in my pajamas is no more. To think that there was a time when taking a shower or styling my hair felt insurmountable seems surreal.
In addition, I remember when I had difficulty going down the stairs because, due to my balance issues, I was afraid I was going to fall forward or at the very least tilt to the back or the side. Now I wake up in the morning and do not have to be focused on this.
I go to bed in the evening and do not worry about whether I am going to sleep through the night. If I do wake up, I do not wake up with the same terrible anxiety or night sweats that I used to get. They happen occasionally but they are nowhere near the intensity.
I also used to have problems with swallowing. I knew I needed to swallow but I could not get my brain to make the connection to the nerves and muscles. Now I drink and eat without thinking about it.
Entering this world of chronic illness and suffering has caused me to get connected with two different Lyme disease organizations—one at the state level and one at the national level. Both host medical conferences for healthcare practitioners. Being involved in this way has given me the opportunity to use my nursing knowledge to enable nursing attendees to receive continuing education credits after the completion of the conferences and to learn the latest information out there.
Going through this difficult health journey and volunteering in this way has allowed my story to be published in local newspapers and a magazine and to be interviewed for a blog talk radio station.
I share this so that you know that this disease does change you but the fruit of that suffering is the ability to stop, look and listen to others’ suffering in a way you would never have been able to do before. There’s nothing like being comforted by someone who’s been there and knows just how hard it is.
Then it causes you to look outward and find the role that best allows you to be part of the fight for better screening, treatment and insurance coverage. You might notice that you will start getting involved with a local Lyme support group or volunteer for a state-level Lyme Association. The more you get educated, the more you will be able to help yourself and be an advocate for others.
God does not waste pain. Hang in there. It’s taken me a LONG time to get to this point. I am not well yet, and I do trust that I will continue to improve past the point that I am at now. But it is nice to be turning the corner. Like I said, it’s been a long time…
The current FDA approved tests for Lyme disease are notoriously insensitive and have been shown to miss more than 50% of Lyme disease cases. Currently, the FDA has approved 84 Lyme tests, which are produced by 28 companies. Approximately 90% of these are ELISA tests, which researchers have found to be too insensitive to be used for screening.
The Food and Drug Administration (FDA) has proposed regulating Lyme diagnostic tests. The types of lab tests the FDA is considering regulating include the Lyme tests manufactured by IGeneX that many patients rely on for accurate diagnosis. IGeneX and other labs like them will be the hardest hit by these regulations, which would leave only the FDA approved lab tests available to patients. Please help Lymedisease.org fight this fight on our behalf.
I was thrilled to be able to talk about Lyme disease and share my story recently on Writestream Radio with Dariaanne.
I am sure it will resonate with so many of you as those of us with Lyme disease have learned about suffering in a whole new way. Although our situations and symptoms may be different, our pain is not.
Remember it’s a marathon not a race, and the more arsenal you have, the easier it is to climb up that hill and get to the other side. It’s a battle no one chooses but one that can be fought and won.
Hope this interview encourages you and better equips you with the knowledge you need to continue the battle.
Hugs to you my warrior friends!
According to the CDC, a person can be infected with a tickborne disease in as little as 10 minutes.
Brazilian ticks that carry Rocky Mountain spotted fever passed the disease to animal hosts in as little as 10 minutes if they had recently fed on another animal, a new study found.
“The current literature, including medical textbooks and guidelines for the general public, has repeatedly advised that an infected tick requires a minimum feeding period varying from 2 to 10 hours to transmit Rickettsia rickettsii – the bacterium that causes Rocky Mountain spotted fever – to humans,” study co-author Marcelo Labruna told Reuters Health in an email.
In the eastern United States, R. rickettsii is transmitted to humans typically by the D. variabilis tick in the adult stage, commonly known as the American dog tick, which feeds chiefly on domestic dogs.
Similarly to the circumstances in the São Paulo, Brazil, metropolitan area, most of the Rocky Mountain Spotted Fever cases in the eastern United States have occurred in children and women, and infections in dogs have been associated repeatedly with an increased risk for disease in owners.
Because numerous reports of infected humans were associated with tick-infested dogs or tick removal within 4 weeks of disease onset, researchers have proposed that many of these cases were a result of direct contact with rickettsiae from tick body fluids during tick removal.
The current literature has considered that an attached tick needs several to many hours of attachment for a successful inoculation of RMSF into human skin. Once it is forcibly removed from a host, a partially fed tick loses its discriminatory senses and strives to feed wherever possible on any available vertebrate animal.
Thus, it is reasonable to consider that tick removal habits in RMSF-endemic areas could have implications for the transmission of R. rickettsii, not only caused by potential direct contact with tick fluids, but also, as shown in this study, because detached ticks could readily attach to humans and inoculate them with rickettsiae within a few minutes.
Read more at Reuters Health.