Field of Dreams: A Personal Story for Lyme Disease Awareness Month 2022

I know it’s been a very long time since I have written a blog post here on My Lyme Symphony, but May being Lyme disease awareness month, I wanted to share a photo I took and the relevant story behind it, something more personal. 

I call this photo "Field of Dreams," which I took in the summer of 2013 on the way to a doctor's appointment. 

This was during a particularly difficult time in my Lyme and health journey, and we were at a serious crossroads as to the next step in my treatment process. 

Like always, my mom drove me, and on the way, we stopped at a gas station to fuel up. As I sat there in our car, contemplating what my doctor and I would discuss, I looked around, and my eyes fell directly on this field. 

It's a field I've passed by many times over the years, but on this day, in light of what was happening, I was especially drawn in by its openness, barrenness, and simple beauty. Stretching off into the distant sky, it looked like Heaven was touching the earth. Even though it was sitting dormant, this field seemed to exude the hope of a brighter tomorrow, which really struck me. 

As I took it all in, not knowing for sure what our next step would be, I pulled out my camera and took a few shots. 

Later that night, after looking through the photos I had taken, I began to see similarities between this barren field and my Lyme journey; it symbolically reminded me of where I was in my life and how we all experience this kind of season at some point. 

I thought how there wasn't as much fruit to show for or match up to all of the extensive, hard work I had done. And then I began thinking about how God often works in such places, how only He can really, and how this field pointed to that very thing. It reminded me of something He [the Father] told me early on—that He would heal me, but in the meantime, His grace was sufficient for me. 

I essentially realized then that although it's not fun, there are times when barren field seasons are important and needed - a field of dreams that hold seeds, holy seeds, of greater potential and hope for the future. Thus the title of this photograph and my life story really. 

It has been 28 years, and I'm still walking through this long, hard Lyme journey. Nothing has been easy, but I have learned much along the way. 

I’ve been so deeply sick and severely fatigued and debilitated for so many years that I spent twelve of them living in bed, only getting out for doctors appointments and blood work and dragging myself there at that (if you're interested in knowing more about my health story, you can go here).

Over this almost three-decade journey, a lot has happened, more than I can write in one blog post. But I'll sum it up and say my field of dreams is still a work in process. 

I live with [chronic] Lyme disease every day and the remaining damage that's been done from 16 years of misdiagnosis. Unfortunately, as many of you know, this is an all too common story, and I often share it because a lot of people aren't even aware this can happen. 

There have been some improvements due to my continuing hard work, perseverance, research, and dedication to not give up on walking out this path laid before me.

Overall some things are better, which I'm truly grateful for, and some are not, which is frustrating and speaks to the ugly truth and reality about Lyme and tick-borne diseases. If you haven't already, I highly recommend reading Kris Newby's book Bitten: The Secret History of Lyme Disease and Biological Weapons.

Some of my improvements have created a whole new set of physical issues I now deal with. So, ultimately, it will take whatever the Father will do for this to be resolved and for me to be completely well physically, which takes me back to what He initially said all those years ago. And so it is for many who are also walking through their own difficult Lyme and health journeys. We all have a story to tell. 

Honestly, I never imagined it would be this long, arduous, harsh, and grinding, but God being God, He's let nothing go to waste. 

While I'm waiting in the meantime, He's sovereignly taking what was meant to destroy me and working it all - the good things, the bad things, the ugly things, the unjust things - together for my good and His glory. He's been nurturing, teaching, and maturing me in the deeper places. 

He’s also been producing and strengthening deeper Jesus roots in me, a root system that is deeply grounded and steadfast in Him, His heart, and His ways. 

At the end of the day, I choose to keep holding onto and declaring the promises of God while I continue to do my part. And although I don't always understand, I do feel an assurance from His heart that He will fulfill His promises and purposes for my life in His timing. It keeps me going in the long haul. 

And so this photo, Field of Dreams, speaks to all of this for me — where the truth, grace, hope, and promises of God and His Kingdom reside amidst all of the earthly hardships, battles, sufferings, and losses. Where the real and raw laboring takes place as the seeds of impossibilities are uprooted and replaced with seeds of possibilities. Where divine revelation, wisdom, and understanding unfold. Where the deep and fertilizing work of the Spirit happens.

It's a seemingly strange, paradoxical, ironic mixture. And while it hasn't looked like anything I was expecting, quite the complete opposite, I believe this is where the Lord often works so powerfully and profoundly. In fact, I believe He does some of His best work in such places.

Indeed, I'm counting on it.

Michelle

Hope Always (Lyme Disease Awareness 2016)

Still here. 

Still hoping.

Still trusting.

Still believing.

Much love to all you Lyme warriors out there!

Michelle

Recent Lyme Disease Research News And Breakthroughs: Part 2

I first began blogging about notable Lyme research news and breakthroughs in November 2012, primarily for myself. And there has been some good news in the world of Lyme research. Good meaning research that reveals the truth about Lyme through the medium of science, which will hopefully lead to higher standards of care for patients, including better testing and treatment options.

Since first posting Part 1 in 2012, more revealing discoveries concerning Borrelia bacteria, Lyme disease, and other tick-borne infections have been published. All genuine research is undoubtedly valuable, but I've chosen five studies I personally think hold significance in the world of Lyme and tick-borne diseases. I'm sure there are more out there, but these are the ones I'm focusing on in this post. They're listed in the most recent order.

Please go here if you'd like to read Recent Lyme Disease Research News and Breakthroughs: Part 1. 

- Michelle


1.) Dr. Eva Sapi, Ph.D., professor and department head of Biology and Environmental Science at the University of New Haven in Connecticut, and her research team suggests the reason the Borrelia spirochetes that cause Lyme disease are often resistant to treatment is because they form a biofilm in the body that allows it to "hideout" from antibiotics.

Their new study, published February 9, 2016, in the European Journal of Microbiology and Immunology, is the first to demonstrate the presence of Borrelia biofilm in human infected skin tissues, confirming these structures can exist in the human body. 

That biofilm - which has a very protective layer you might call "slime" - actually makes the bacteria up to 1,000 times more resistant to antibiotics than other bacteria.

"These findings could change the way we think about Lyme disease," Sapi, who has chronic Lyme disease herself, said, "especially in patients where it seems to be a persistent disease, despite long-term antibiotic treatment. This recent finding could help to better understand how Borrelia can survive treatment and elucidation of the biofilm components and will provide novel therapeutic targets for chronic Lyme disease, with the hope of eradicating Borrelia in these patients."

UNH Research Confirms Lyme Disease Bacteria Biofilm in Human Body (University of New Haven Press Release, February 23, 2016)

Evidence of In Vivo Existence of Borrelia Biofilm in Borrelial Lymphocytomas (Akademiai: European Journal of Microbiology and Immunology, February 9, 2016)

**************************************************************

2.) Researchers at U.C. San Francisco and Johns Hopkins may have found a new way to diagnose Lyme disease based on a distinctive gene "signature" they discovered in white blood cells of patients infected with tick-borne bacteria. 

Dr. Charles Chiu, MD, Ph.D., an associate professor of laboratory medicine at UCSF, and lead investigator for the study, and Dr. John Aucott, MD, assistant professor of medicine at Johns Hopkins University School of Medicine, and senior investigator on the study, published these findings February 12, 2016, in mBio, a journal published by the American Society of Microbiology. 

In the study, researchers examined 29 patients before and after receiving a 3-week course of antibiotic treatment and then again 6 months later. Compared to patients with other active bacterial or viral infections, the Lyme disease patients had distinctive gene signatures that persisted for at least 3 weeks - even after taking antibiotics. Some differences in the transcriptome lingered for 6 months. 

"To our knowledge, this study is the first to document changes in gene expression occurring even after a bacterial infection has been treated with appropriate antibiotics," said Dr. Aucott.

Gene Signature Could Lead to a New Way of Diagnosing Lyme (University of California News, February 17, 2016)

Gene Discovery Could Point to New Lyme Disease Test (U.S. News and World Report Health, February 12, 2016)

**************************************************************

3.) Researchers from Rutgers University Public Health Research Institute at New Jersey Medical School are developing a vastly improved test for Lyme disease and associated pathogens Anaplasma and Babesia.

Dr. Nikhat Parveen, Ph.D., an associate professor in the Department of Microbiology, Biochemistry, and Molecular Genetics, and Dr. Salvatore A.E. Marras, Ph.D., an assistant professor in the same department, have been working on the new assay since 2006. Today, the test is significantly closer to widespread availability. It could still take a year or more before the assay is licensed and receives FDA approval.

What makes the test so important for Lyme sufferers or those suspected of having Lyme disease is its accuracy. Their assay is based on molecular beacons, which Marras compares to "little lanterns," that will light up when they encounter specific pathogens associated with Lyme, allowing this new blood test to reveal the presence of the bacteria themselves rather than just antibodies to them. Also, the test's ability to find and distinguish Anaplasma and Babesia makes it potentially valuable to blood banks, which at present have no way to test for these pathogens.

Lyme Aid (Rutgers Magazine, Rutgers University, New Jersey, Winter 2016 Issue)

**************************************************************

4.) Researchers at the University of California, Davis, led by Dr. Nicole Baumgarth, DVM, Ph.D., a professor in the School of Veterinary Medicine and an authority on the immune response to infectious diseases at UC Davis Center for Comparative Medicine, published findings from their mouse-based study July 2, 2015, in PLOS Pathogens, which demonstrated that an animal infected with Borrelia burgdorferi, the corkscrew-shaped bacteria that cause Lyme disease, launches only a short-lived immune response. That protective immunity against repeat infections quickly wanes. 

Bacteria initially triggered a robust immune response in the infected animal. Still, findings from this study indicate the bacteria soon cause structural abnormalities in "germinal centers" — sites in lymph nodes and other lymph tissues that are key to producing a long-term protective immune response. 

This discovery may explain why some human patients remain vulnerable to repeat infections by the same strain of bacteria.

Suppression of Long-Lived Humoral Immunity Following Borrelia burgdorferi Infection (PLOS Pathogens, July 2, 2015)

Lyme Disease Subverts Immune System, Prevents Future Protection (University of California Davis Press Release, July 2, 2015)

**************************************************************

5.) Dr. Kerry Clark, Ph.D., associate professor of public health at the University of North Florida, and his colleagues made a huge discovery and published their findings on May 13, 2014. Instead, I should say they made scientific confirmation of what many of us with Lyme already know. Lyme disease exists in people in southern states. 

Dr. Clark's research findings establish much-needed scientific credence. He has studied Lyme and other tick-borne diseases in the southeastern United States for the past twenty years. His findings are very significant because medical doctors and the CDC have said for years that Lyme is rare or nonexistent in the south.

Geographical and Genospecies Distribution of Borrelia burgdorferi sensu lato DNA Detected in Humans in the USA (PubMed, May 2014)

UNF Professor Confirms Lyme Disease in Humans from Southern States (University of North Florida Press Release, May 13, 2014)

Lyme Disease Confirmed in Humans From Southern States (Science Daily, May 2014)

Rise Up by Andra Day (Live Acoustic Version)

We help one another RISE UP each time we take the time to listen when one of us is having a tough day. Each time we say, I care about how you're feeling. Each time we pray for one another. Each time we speak words of hope and encouragement. Each time we allow someone's tears to fall, and we cry with them. Each time we support one another through setbacks, challenges, and struggles. Each time we rejoice and celebrate milestones and victories together. Each and every time. 

Sometimes, we rise up in grand ways. 
Other times, we rise up in small ways. 

Either way, it matters. 
You matter.

This song is for you, my friends. 
Be lifted up and know you are deeply loved and cared about. 

Always,

Michelle

Hold Onto Hope

My story's not over.

And neither is yours.

Keep holding onto hope, friends.

Always.

Michelle