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 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!

Tick Infection Can Happen in Less than 10 Minutes

ticksAccording 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.

Reuters Health

Tune in Tuesday for My Interview on Writestream Radio

WstreamWhiteLogoTM1Tune in this Tuesday, October 7, to Writestream Blog Radio from 1:05 to 1:55 pm where I’ll be talking about my story, sharing facts about Lyme disease as well as the work I’ve been doing as a Lyme advocate. The chat room will be open so call 347-945-7246 with any questions or comments. Look forward to interacting with you on Tuesday. Hold on to hope. We are a community, and we need each other.

You are not alone. Remember that each and every day as you walk this journey.

And reach out to me if you have not found support. There are several different communities that I can point you to where you can find hope. This is not a journey one can walk alone.

National Lyme Disease Conference

ILADS ConferenceI wanted to pass on to you that the International Lyme and associated Diseases Society (ILADS) is having their national Lyme Disease Conference from October 9-12 in Washington DC.

There is a fundamentals course on the 9th entitled, “The Fundamentals of Diagnosing and Treating Tick-Borne Illness.”

The scientific conference is being held the 10th thru the 12th, and is entitled, “15th Annual Scientific Conference: Neurological Spectrum.” It will provide evidence based medicine and will describe the clinical spectrum of tick-borne diseases, their diagnosis and treatment, and the assessment of co-morbid conditions.

If you are a healthcare practitioner or know of any health care practitioners who would like to learn more about diagnosing and treating Lyme disease this would be a wonderful conference for them to attend. Click here to read more and to sign up: ILADS-Washington DC.

Or if you have a loved one with Lyme disease and would like to learn more, please call ILADS to see if there is room for you to sign up. There are always some spots reserved for advocates and loved ones.

This conference will include the top Lyme physicians, including my doctor, Dr. Joseph Jemsek.

It has been approved by the American Medical Board so physicians can receive CME credits for attending. In addition, this conference is pending approval by the Nursing board for 25 Nursing CEU credits.

Once it is approved, I will be there to sign in and hand out certificates to the nurses. It would be nice to meet any of you attending.

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.