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!

The KLS Diamonds and Denim Gala 2015 is on!

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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!

Statewide Lyme Disease Legislation

USThe LDA has compiled data on bills, laws, resolutions, and hearings in the various states across the United States. It includes the respective name, purpose and action that has been taken on each by the appropriate governing body. I found it to be quite interesting and informative.

To read it, click here.

Research Discussing the Importance of Long-term Lyme Disease Treatment

research_11Some have asked if there are any research articles that discuss the importance of long-term treatment for chronic Lyme disease in certain situations. Here is one that you might find helpful: Overview of Evidence Supporting the Need to Update the Infectious Disease Society of America’s Guidelines Regarding the Treatment of Lyme Disease.

I will continue to post more so you can understand the science behind the importance of treating beyond the standard two weeks in certain cases.

Mayday Project

Lyme Activists to Target IDSA’s IDWeek Conference
Philadelphia, PA – WEBWIRE – Sunday, September 21, 2014

MayDayOn October 10th and 11th, 2014 chronically ill Lyme disease patients and supporters from around the United States will gather for a protest at the IDWeek medical conference in Philadelphia.
 
They will call on the Infectious Diseases Society of America (IDSA) to update its guidelines for Lyme disease to reflect the current state of science and improved standards for patient care.
 
Protest co-organizer Josh Cutler has been fighting late stage neurological Lyme disease for nine years. This condition affects the brain, the central nervous system, and the autonomic nervous system that regulates blood pressure and other vital functions.
 
“We are uniting to demand that IDSA stop its misrepresentation of science and update its guidelines for Lyme,” says 34-year-old Cutler, who went from good health and a high paying IT job to near total disability after he was infected with Lyme. “IDSA needs to put our health first, ahead of patents and profits.”
 
A key concern of protesters is the refusal of IDSA and CDC to acknowledge the epidemic of chronic Lyme disease and the serious threat it poses to public health.
 
Kenneth Liegner, M.D., who speciallizes in internal medicine, critical care, Lyme disease and related illnesses, suggests that IDSA has neglected to consider a large amount of evidence that chronic Lyme exists and is common. Liegner practices in Pawling, NY near the epicenter of the Lyme epidemic.
 
In a September 2010 letter to the Institute of Medicine, Liegner said:

“Honest review of the worldwide peer-reviewed scientific literature reveals an abundance of evidence for the existence of chronic Lyme disease . . . . The standard of care set by the IDSA 2006 Lyme disease guidelines is one of medical neglect of persons suffering from chronic Lyme disease.”
 
Another concern among activists and many physicians is the extent conflicts of interests have influenced the IDSA guidelines and Government policies to the detriment of patients.
 
A review of a Lyme Disease Association report: Conflicts of Interest in Lyme Disease: Laboratory Testing, Vaccination and Treatment Guidelines shows dozens of potentially serious conflicts of interests among the members of the CDC and FDA committees that set Federal policy on Lyme disease. The same report documents widespread conflicts of interests among members of the committee that produced IDSA’s guidelines for Lyme disease.
 
According to a report by the U.S. House of Representatives Committee on Government Reform: “The CDC’s policy of issuing annual waivers creates an environment where people do not take the conflict of interest issue as seriously as they should. This policy, in concert with sloppy monitoring of the completeness of members’ financial disclosure statements, allows for a clubby environment where ethical concerns are downplayed.”
 
A vital issue that affects all Lyme patients is insufficient Federal funding for research, awareness and prevention. FY2013 NIH funding for Lyme, at $20 million, is barely one percent of the $1.8 billion of NIH funding for emerging infectious diseases (Lyme is included in this category), despite the number of new cases of Lyme annually being many times greater than any other disease in that category.
 
Some researchers have also expressed concern about the quality of federally funded research.
 
Willy Burgdorfer, discoverer of the bacteria that causes Lyme, had the following comment when interviewed by the director of the award winning documentary Under Our Skin:
 
“The controversy in Lyme disease research is a shameful affair. And I say that, because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing. Serology [testing bodily fluids for exposure to diseases] has to be started from scratch with people who don’t know beforehand the results of their research.”
 
The IDWeek protest is organized by the Mayday Project Lyme patient advocacy group. Co-founders Josh Cutler and Allison Caruana call on Lyme patients and others touched by Lyme to stand together in Philadelphia and make a difference:
 
“We demand an end to the conflicts of interest by researchers who create guidelines that discourage doctors from providing the best standard of care. Together, we will send a strong message that the handling of the Lyme epidemic by IDSA, CDC and FDA is appalling and shameful and that patients are joining forces to fight back and demand reform.”
 
 
About the Mayday Project
 
The Mayday Project is an advocacy group for Lyme disease patients, formed by volunteers who have been touched by Lyme in many ways. They aim to raise awareness about Lyme disease and related tick-borne illnesses. Mayday supporters advocate for more accurate tests, better guidelines, improved access to treatment, increased education for physicians, and more funding for research.
 
For more information visit The Mayday Project.

My Lyme Story: Month Nine

Dr. Jemsek and I at my 9 month appointment

All smiles with Dr. Jemsek at my 9th month appointment

It’s been a while since I’ve posted an update on my progress but I am excited to share some good news: my PICC line is out! Last Thursday, after completing my ninth month of IV antibiotic treatment I visited Dr. Jemsek. After examining me, he announced his confident diagnosis that the infection had been subdued enough to warrant the removal of the PICC line and the transition to oral antibiotics. Needless to say, I was ecstatic to hear those words!

The removal of the PICC line

The removal of the PICC line.

Even better, he told me the nurse could do it right there in the office. Initially I was terrified it would hurt but was relieved when the process turned out to be painless, although I could feel the line coming out. And the anticipation of washing my hair and taking a shower without a bulky cast protector was incredibly encouraging. Ah, life’s simple pleasures!

Best of all, a new phase of my journey would be unfolding.

Still, Dr. Jemsek was quick to remind me the oral antibiotics are required for another year to year-and-a-half because even though the infection has been severely weakened, it still needs treatment.
 
While I clearly see improvement, it is evident I am not yet out of the woods. I still experience some of my symptoms but not at the same intensity.
 
I wish I could tell you this journey is easy and quick, but unfortunately it is not. Anyone who endures can take heart that they’ve been blessed with incredible strength. Keep the faith and keep on fighting!

It’s a Marathon not a Race

imageIt’s always interesting when your doctor tells you, “This will be the hardest month.” I saw Dr. Jemsek for my 6-month checkup on Thursday, May 1, the first day of National Lyme Disease Awareness Month.

Dr. Jemsek was pleased that I have been tolerating the treatment so well, and warned me that the 6th month treatment would be the most difficult of any of the months. He explained that we would be doing heavy biofilm busting the first week of the protocol and lots of clean-up the second week. The third week will include heavy hitting of Babesia. This will result in attacking the bacteria that have been in hiding and killing them.

Continue reading

Don’t Look Back!

Month 5 Update

Karen SmilingAs of today, I am officially finished my month 5 regimen and on treatment break until May 1. I am happy to be finished such a difficult month, and am grateful to be feeling pretty well. As I read through my journal entries of these past few weeks, it is hard to believe it was really me who wrote them. I share them for those who are going through treatment thinking no one can relate to their suffering and that the suffering will never end. You really will get well. It just takes time and perseverance. I may be in my 5th month of IV treatment with my current doctor, but I have struggled for several years with other doctors prior to this, thinking this is how it would always be.

Running Tygacil

Running Tygacil at Betsy’s

Friday, April 4: I received my test dose of Tygacil last Tuesday and haven’t had any treatment since. So why do I still feel so awful from it? Woke up with such bad flu symptoms. Shivered all night long. No sleep. How is it I can be walking but really feel like I am dead? If I run the lactated ringers, which is supposed to be flushing out the dead toxins caused by the IV Tygacil, how can I still feel dead? If I get in the shower, it is good because it wakes me up but I still need to get back in bed, put on the heating blanket and lay there like a dead person. It all is confusing. Feel like the blood or fluid in my head is clogged and my brain is pounding, almost like something is squeezing it. Is this a headache? No, a headache doesn’t quite fit the feeling up there.

Saturday, April 5: I get woken up with a jolt with my heart racing and a nightmare night after night. I hate it but must tough it out. The itchiness drives me crazy. I’d like to scratch my skin off but I don’t. Feel so cold. Am under my down comforter but if I don’t turn the heating blanket on, I can’t warm up. My left eye lid is twitching constantly but Dr. Jemsek says it is only because the medicine is pulling bacteria out of the ocular nerve and it is being irritated. He says the nightmares and rapid heartbeat will go away as fewer bacteria are in there. He says it is coming from the bottom of the brain stem where the bacteria like to lie. It does not like to be stirred up. Ok. I will persevere. I have persevered for several years so what is a few more months?

Trying to stay still as the Tygacil runs through my body

Trying to stay still as the Tygacil runs through my body

Tuesday, April 8: Ran IV Tygacil last night. So nauseous. Dr. Jemsek says to take Zofran and two Marinol. Back of my head is spinning, spinning. What a freaky feeling. Medicine does not help. Still nauseous. Lay still in bed. So hard to try to lift my head up to take the oral medicines because the spinning intensifies. This Friday is the April Pennsylvania Lyme conference that I worked so hard at to make it possible for the attending nurses to get CEU credit. So disappointed I need to cancel and cannot give them their certificates. Hopefully I’ll be well enough to do it next year. Legs are aching, throbbing, and no appetite; need to force the food that Betsy gives to me. Ask her if I can have a smoothie instead. Maybe I will have more luck with that. Sheila brings me homemade soup. Tiny sips to keep myself hydrated.

Saturday, April 12: Made it through the week of Tygacil. Try to get out of bed but my knees are so wobbly and heavy. Get back in bed. Maybe it is too soon to get up. The nausea overwhelms me.

Running Cipro at Betsy's

Running Cipro at Betsy’s

Sunday, April 13: First day for my next set of IV antibiotics, Cipro and Merrem. So so queasy. Mom has tickets to the Phillies game. Try to tell her I’m afraid to go in case I throw up right there. She’s disappointed. Leif picks me up, holds my arms because I am so weak to walk. We bring a trash bag in case. I look straight out and don’t turn my head as we drive. We put my seat down so I can rest. Leif carries my shoulders. I look straight ahead, sit in my seat and don’t move. Can’t wait till it’s over. Oh how awful to have such good seats and want it to be over. Make it home without incident. Thank you, Jesus. Time to run evening dose. Fall asleep, wake up to my IV finished. Thank God I woke up.

Monday, April 14: Wake up again in the middle of the night with a jolt and heart palpitations. Wake up to the song, “Oh the Wonderful Cross.” “Love so amazing, so divine, demands my life, my soul, my all.” Very good reminder that no matter how bad this feels, God is on the throne, and He is good.

Thursday, April 17: Holy Thursday. Read Luke 21-22. I wonder what Jesus was thinking when he sat on that hill at night after he taught all day in the temple knowing that was the spot that Isaac was sacrificed and where he would be sacrificed the next day? Last day of treatment. Thank you, Jesus. Maybe the symptoms will subside. Gillian brings over potato soup for me to freeze. I now have homemade soup from Sheila, Anne Bradley and Gillian. Now I can take small sips of them. So grateful to have them. Still so nauseous so can only tolerate tiny amounts. Weak, body is so weak. Shower is a huge accomplishment. Back in bed to rest. Hard to breath. What is that about?

Friday, April 18: Last dose of Cipro and Merrem last night. Difficulty with sleep. The racing heart and nightmares go out of control. Chills, Cold sweats throughout the night. Didn’t realize my heating blanket was not on. That was why I was so cold. Feeling of the flu upon awakening. Run the lactated ringers to see if it helps. No relief. Keep my heating blanket on all day. This is the day the Lord suffers. How did he manage it? Was the fact that He knew the future any comfort for Him? The fact that He was humiliated, rejected, beaten is beyond understanding. It is beyond understanding that it was God Himself who took this on. Not a robber or a thief but rather God Himself. The perfect Lamb walked on this dirty cruddy earth and subjected Himself to the basest of deaths. Ok, I can get through this day if He could get through the Cross.

Easter Sunday, April 20: unbearable headache the last two days. God help me to enjoy Easter, the day you made our faith truth. God gives me some relief and I enjoy my time with my family. One of the greatest Easters. It’s so exciting to see the kids getting older, each with unique personalities. We celebrate Jack’s 7th birthday.

Monday, April 21: No IVs this week but must take the antimalarial Coartem the next three days. Excruciating headache is back. Lie still all day. Ok, didn’t know it was possible to have a headache this bad.

Tuesday, April 22: Headache is still there in the morning. Drink several bottles of the flavored water that Leif drops off. It leaves . With the exception of the wobbly knees, I’m feeling pretty good. Run two bags of lactated ringers to keep getting those dead toxins out. It works. Get to see Christopher and Colin. So proud as if they are my own. Can they be anymore perfect in my eyes? No, it is not possible for any of my nieces and nephews to be anymore perfect in my eyes. Nurse comes to see dad. Although he is failing, he is still holding on.

Wednesday, April 23: Last day of Coartem and last day of treatment until I go back to the doctor’s on May 1. Feeling pretty good. Feel happy, no nausea. No headache. Life is good. God is good. I made it through and I feel good! Allister Begg’s devotional today says: “Jesus wears the appearance of a slain Lamb as His royal dress in which He wooed our souls and redeemed them by His complete atonement. And these are not only the ornaments of Christ: they are the trophies of His love and of His victory for us. He has redeemed for Himself a great multitude that no one can count, and these scars are the memorials of that fight.” Thank you Jesus for fighting for me on that Cross and thank you for helping me to fight through these treatments. How would I survive in those dark moments without knowing this, without knowing the hope that you give?

On to month 6 soon. Seems impossible but it is true. Dr. Jemsek says month 6 will be harder but I will do it. I will because my God will fight the fight for me!

“The LORD your God will fight for you; you need only to be still.” Exodus 14:14

Month Five…Can it Be?

Receiving my Month 5 Protocol

 
Betsy and I drove down to Washington, DC, on Tuesday, April 1, to see Dr. Jemsek for my 5 month appointment. He told us that he was happy with my improvement thus far, and that I would now be entering the hardest two months of my protocol.

Dr. Jemsek writing out my plan

Dr. Jemsek writing out my plan

“Thus far, we’ve cleared out the periphery but now we have the biofilm to blast, which is the deepest layer. The disease likes to infect the bottom of the brain, and we need to get it out of there with some heavy hitters. We will be using IV Merrem as well as a new one called IV Tygacil to reach those layers.”
The nurse mixing up Tygacil

The nurse mixing up my Tygacil test dose

Tygacil can make a patient nauseous so he said that I should keep ginger, Zofran or phenergen on hand.
 
After they ran the Tygacil in the office, I went straight back to the hotel and fell asleep for four hours. I woke up for some dinner and slept another 12 hours but I never got sick. This was my prayer, and I was grateful to God for His protection.
 
Month 5 will require treatment for 3 weeks in a row with a one week break at the end. The first week I will be dosing with the Merrem and Tygacil on Monday, Wednesday and Friday. I will also be taking an oral antibiotic, antimalarial and anti-fungal Monday through Friday. In addition, I will be mixing xylitol with water and taking 2 tsp a day for 8 days along with a pill called Lactoferrin. This makes a sugar alcohol mix that acts as a detergent scrubbing open the biofilm that the bacteria hide in.
 
On the second week, I will be running IV Merrem and Cipro twice a day Sunday through Thursday. Cipro makes me queasy, and I’ve never taken it 5 days in a row so I pray for the best. The next week I will take the anti-malarial Coartem, which gave me intense nightmares and made me feel depressed the last time I took it. But I’m thankful it will only be for 3 days.
 
brain-answersThis month’s protocol will be pulling the bacteria out of the brain in the most powerful way yet. Thus, the side effects could be harsh, both physically and mentally. As always, I will need to think with my head remembering that God is there with me even when my emotions try to tell me otherwise. I’ve been very blessed with a core support network and a good God so I know I will get through it yet again. There is a lot to be hopeful about!