Singer Avril Lavigne opens up about her struggle with Lyme disease

avril lavigneCheck out this article in this month’s People magazine in which Avril Lavigne opens up about her struggle with Lyme disease and how she’s fighting to recover: People magazine. And watch her interview below.

Kudos to celebrities who speak up about this devastating disease!

Cuomo signs bill safeguarding Lyme treatments

Good News for Lyme Disease Sufferers in the State of New York

PoughkeepsieDecember 18, 2014 — Doctors who prescribe longer courses of antibiotic treatments for Lyme disease have new protections under New York state law today.

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.

The KLS Diamonds and Denim Gala 2015 is on!


You Are Cordially Invited!

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!

Della Donne to Raise Lyme Disease Awareness

Women’s NBA star, Della Donna, to serve as first national Lyme Research Alliance (LRA) Ambassador

Della DonneChicago 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!


The Beauty of a Moment

imageNow 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.

Transitioning to Oral Antibiotics

Out at Longwood Gardens with a friend celebrating the removal of my PICC line

Out at Longwood Gardens with a friend celebrating the removal of my PICC line

I never thought it would get here but I made it through 9 months of intense IV antibiotics. This is a cause for celebration! Thank you to those of you who have helped me get there through your prayers, financial or physical support.

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.

Some of the many antibiotics and supplements I am taking this month

Some of the many antibiotics and supplements I am taking this month

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.

Goodbye IV supplies..I sure it's forever!

Goodbye IV supplies..I sure hope it’s forever!

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.

No more showers with a cast protector covering up my hand and arm!

No more showers with a cast protector covering up my hand and arm!

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.

Sending off my extra saline flushes so that someone else can be helped

Sending off my extra saline flushes so that someone else can benefit from them

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.

My unused IV tubing gets packed up so someone else can benefit from it

My unused IV tubing gets packed up so someone else can benefit from it

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…

Survey for is trying to collect data for a document they intend to give to the FDA. I encourage those who have Lyme disease to fill out this survery to help them.

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 fight this fight on our behalf.

My Interview with Writestream Radio

writstreamI 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!