Tag Archives: lyme journey

Woman looking back

2020 Vision For Lyme Warriors

by Jennifer Crystal

Here are some things I now know for sure, things I wish I’d known, looking back on my Lyme Journey

As the saying goes, hindsight is 20/20.” Its easy for us to look back from the vantage point of experience and say, I wish Id done X,” or If only I could have known Y.” It isnt always so easy to see those options when were living our daily lives, making real-time decisions based on the information we have at the moment.

When I look back across my 20-year health journey, I recall many points of confusion, fear, and desperation. I remember the mixed messages from health professionals. I think back on the skepticism from those who were supposed to help me. I recollect the disbelief in myself, in what my body was telling me. I know so much now that I wish Id known then. And while I cant change my past, I hope I can use it to help make another patients health journey a little easier.

Here are some things I now know for sure, things I wish Id known at various crucial points of my own journey:

I really was sick.

When I first developed a rash, and then hypoglycemia, and then a debilitating flu at age 19, I was not going crazy. I was not stressed. I was not run down. I did not need to exercise more. The symptoms were not psychosomatic. I had been bitten by a tick and was sick with real physical illnesses, namely Lyme and two of its co-infections Babesia and Ehrlichia. It would be another eight years until I was properly diagnosed. That delay was so extensive in part because of the disbelief or just plain ignorance of many health professionals. Naturally, I believed them too.

If I had been accurately diagnosed promptly, my whole life would have been different.

I was bitten by a tick in 1997, and perhaps again in 2001 or 2002, but I wasnt tested for tick-borne diseases until 2005. Testing is faulty now and was even faultier then, so even if Id been tested for Lyme or co-infections, I might have gotten a false negative and been told I was well.

But I also might have gotten a true positive. If Id seen a Lyme Literate Medical Doctor (LLMD)—or even known that such a specialist existed then—they might have made a clinical diagnosis right away. I might have taken just three weeks of recommended antibiotics and been fine.

Instead, I developed chronic infections that, 20 years later, are in remission but by no means cured. I went through years of intense antibiotic therapy, including intravenous antibiotics, and I’m still on medications to this day. I dont live my life with regret, but I would regret it if you were in the same position and didnt learn from my story. If you discover a tick bite, or have symptoms of tick-borne illness, you dont have to suffer for years without treatment. You can find a good LLMD in your area and get a head start on your return to wellness.

If a loved one has symptoms and doesnt know about Lyme disease, or doesnt know how to find a doctor, offer to go through the process with them. Remember that Lyme patients are often frightened, anxious, and even neurologically impaired. They need real help when it comes to navigating their path.

Lyme Literacy improves over time.

I dont blame the many health practitioners who missed my case in 1997, because tick-borne disease wasnt on the radar then. I believe that if I presented now with the same symptoms as I did in 1997, at least one of those practitioners would think about the possibility of tick-borne disease. Thanks to media coverage, increased awareness and education efforts, and, unfortunately, the expanding number of cases, Lyme literacy has greatly improved in the last 20 years. That should give us hope for the future.

Healing is not linear.

It took me a long time to get diagnosed. Therefore it took me a long time to get well. Along the way, there were many bumps in the road, and even some large potholes. Once I was diagnosed, I figured Id take medicine and slowly get better, as one would from bronchitis or a sinus infection. But thats not how it works with tick-borne disease. It can take a while for your LLMD to figure out the best treatment protocol for you since each case is unique. You will likely experience a nasty Herxheimer reaction, which means you will feel worse before feeling better. As I discussed in my Gratitude for the Long Game post, the journey through tick-borne disease is an up and down process like a spiraling helix that ultimately stretches towards wellness.

Not everyone will get it.

Lyme patients often spend time and energy they dont have trying to convince doctors and loved ones that they really are sick. Once they are diagnosed, they may feel a sense of validation, but that doesnt mean that everyone will immediately understand what theyre going through. I still knew people who didnt believe me, those who thought my doctor was a quack, those who thought I just needed to push through it.” These people didnt understand that Lyme is complicated and comes in myriad forms; they didnt want to hear about chronic illness and asked, Arent you over that yet?”

At first, I wasted a lot of energy trying to convince these people of the truth. But eventually I realized, I dont need them to understand. The only people who really need to get it are my doctor and me. I’m focused now on the people in my life who do want to understand, the folks who have offered unconditional support. I stopped worrying about the others. I don’t need their approval.

I came to understand that many of those people were well-intentioned, but were reacting out of fear or ignorance. Some of them did come around. My own familys understanding of tick-borne illness blossomed alongside my own as they eventually read the books, watched the documentaries, attended the conferences, and accompanied me to doctors appointments. So while I have no more time to lavish on the doubters, I do hope that one day they will see the light.

No two cases are alike.

Every case of tick-borne disease is different; that means every treatment protocol is different, too. Patients write all the time to ask me what particular medication I took. But it doesnt help for me to say which medications Ive taken. Fact is, I’ve used many different combinations over time but never a single magic cocktail. That’s because what worked for me might not work for you, and vice-versa. It can be easy to think, “Well antibiotic X worked for her in five weeks, so it should work for me too.” Or, “My friend got better from Lyme in one month, so my son should, too.” Its imperative to remember that each case is unique. Be patient with yourself, or with your loved one, knowing that each body heals at its own pace.

It gets better.

When I was bedridden with exhaustion, migraines, aching joints, and insomnia, I never, ever believed I could have gotten as well as I have. I am heading into the new decade still managing my tick-borne illnesses, but I’m doing it in the context of a full and happy life. Reflecting on my past has given me gratitude, wisdom, and resilience, and those tools will help me see clearly as I step into 2020. May your vision also be clear, and your new year bright!


jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at [email protected].

brooke procida_lyme journey

A Different Kind of Lyme Journey

Brooke Procida Takes to the Road to Promote Lyme Disease Healing

 

Many of us have embarked on cross-country adventures with plans to enjoy America’s superb national parks, cultural landmarks and regional cuisine. But Brooke Procida, an actress/writer/producer who has appeared on such TV shows as “Family Matters,” “The Sopranos,” and “As the World Turns,” is now on a journey that one might describe as participating in the business of humanity.

On an eight-day car trip that started on January 17 in Hilton Head, South Carolina and ends in Los Angeles this Thursday, Procida—a Lyme warrior who believes she went undiagnosed with the tick-borne disease and several other co-infections for more than 30 years—is meeting and interviewing patients, doctors and healers. She is joined on her journey with a crew of four who are filming her interviews for a “LymeLight Journey” docu-series.

Procida’s goal, she said, “to provide hope and inspiration” to countless individuals who are coping with Lyme disease and various other illnesses that “are often difficult to diagnose, expensive to treat and have often been deemed ‘incurable.’

“I have been all over the world,” Procida said.”I’ve seen hundreds of doctors and specialists and spent a lifetime researching health and healing,” she says. “Few persons have more information and experience than I do, which uniquely prepares me to undertake this journey of discovery and healing.”

brooke procida
Brooke Procida (left) on her LymeLight Journey, joined by Hannah Pips photo @lymelightjourney

The Long Island native who said she is “completely recovered” from Lyme,  says she wanted to take her story on the road to talk with others who have recovered from “incurable” illnesses as well, and to “make sure that we as a nation start to look at incorporating and covering integrative therapies in this country, especially in cases where conventional medicine falls painfully and blatantly short.”

Procida says she thinks she first started suffering from Lyme when, at eight years old, her knee swelled inexplicably. Specialists thought she might have rheumatoid arthritis. Then she started to suffer from “massive chronic fatigue” followed by vertigo, panic attacks, chronic sinus infections and colds. She saw countless doctors and underwent numerous treatments. All through my twenties and thirties I was never one hundred percent,” she said. “There was a lot of confusion, sickness and pain.” One day in 1995, she said, she felt so sick and that she was certain she was going to die.

Her career constantly derailed, it wasn’t until six years ago that an integrative medical physician finally tested and diagnosed her with Lyme. “I asked my mother,” Procida said, “how could I have lived in Long Island and not known that Lyme was a real threat?”

Over the course of the next few years, Procida says she was “barely existing…all I was doing was surviving.” At one point, though, after “many times of being incapacitated,” she went to an integrative healing center in New York.

I visualized myself getting better. I knew I was done being sick,” she said.

Today Procida is eager to share her experiences with others and hopes she can serve as an example to those who feel there is no chance of ever recovering. “I want to give people hope,” she says. “Without hope, nothing will work.”

She and her crew have already filmed interviews in New Orleans, LA; Tallahassee, FL; New Orleans, LA; Austin, TX , and Lubbock, TX. For the balance of the trip, they will be in Phoenix, AZ; Palm Desert, CA and Los Angeles.

Procida’s LymeLight Journey project is being completely funded by way of a Go Fund Me page. For further information, go to LymeLightJourney.org