Anne is a seeker of the "silver lyming," which you will learn in this interview. Throughout her 7 year search for answers, she clung to hope no matter how difficult it became. She recently received a Lyme diagnosis, and is starting to feel better with proper treatment and lifestyle changes. When Anne started to improve, she knew she wanted to give back to others who were suffering and felt alone. She reached out to the PA Lyme Resource Network for help starting a local support group in her area, which is now up and running. In the short amount of time since her diagnosis, Anne is already making a big impact in the Lyme community. You can follow Anne and her personal journey on Twitter @AnneDes15.
Tell us a little about who you are and what you do:
I am working on defining myself right now after recently being diagnosed with Lyme on 8.2.17. I fought it for 6-7 years before I finally got a medical diagnosis. This is an exciting time in my life, because I'm feeling so much better. I have a resurgence of energy and I'm finding things to do with myself since I don't have to use every ounce of energy to solely survive. I'm very grateful to have been able to at least work while I was so sick. I changed jobs about 18 months ago which is one of the best things to have happened to me. My stress level has been greatly reduced. I'm a sales person and work for Grafika in Sinking Spring, PA helping my customers, mostly manufacturers, with their paper board and pressure sensitive labels. It is a great fit for me. I have always been fascinated with manufacturing. I truly wake up everyday and say thank you God for letting me find this role.
I am very competitive by nature and love being outside. I've recently embraced Bikram yoga, and just completed 30 days straight and am working on 60. I enjoy learning (especially about how to heal from Lyme disease and nutrition), meditation, sunshine, warm breezes, star lit nights, my doggie, and that I am still here. I thoroughly enjoy helping others and believe that is why I am still here.
What is your Lyme story? How do you think you contracted Lyme and how long did it take you to get a diagnosis?
I'm not sure how I got it...never saw a tick. No rash that I remember either. My mom was always vigilant of us when we were little so I am very familiar with how you get it and what to look for, but none of those signs came. I always thought my face would be paralyzed too as that was what my mom most freaked me out about. I use spray when I am outside so no idea how it happened. But I remember the fatigue hitting me hard. I was really scared and started complaining to doctors about the fatigue. I can remember days at my old job sitting at my desk thinking I could fall asleep if I just closed my eyes but never did. I wanted to crawl under my desk, especially in the afternoons, and never come out again. So began my journey with the doctors. I went first for sleep apnea testing because that runs in my family. I was negative but after the nap series test, they told me I had narcolepsy because I went into REM 3/5 times within 5 minutes, which was very unusual. I was not too concerned since I have always been a good sleeper and I knew that was not what was ailing me. I had allergy testing done, because it seemed to occur in the afternoons, so I thought maybe I was having trouble processing lunch. Nothing there. They then ran a bunch of different tests and my thyroid was slightly elevated which the specialist said was nothing and my white blood cell count was a little high but i was just getting over a cold so they said that was why.
I went to my regular doc and he screened me and said I was healthy too. My dental hygienist asked me if I was super tired because the plaque had changed on my teeth. God love her, she was the only one that believed me and I burst into tears because someone finally was getting it. She said to get checked for Vitamin D deficiency, anemia, diabetes, and thyroid issues, which I did, again, and all looked fine. They kept telling me I was too stressed. I agreed with them that I was too stressed but it wasn't that bad. I live in a first world country, mostly with no guns and bombs going off, have a safe place to sleep, good food, family, friends, and a job. Not having those things, I could see maybe stress making me as tired as I was. I feel I am pretty good at reality checking myself when I am thinking things are bad so I just didn't believe it was simply stress. I went to have an HIV test done which was terrifying to me and the lady did not make eye contact when she called me to talk about my results so I again started crying because I thought that must be it. No, I am healthy.
I started changing things in my life by this point. I also sought out a therapist. I gave up caffeine for a while, became a vegetarian for two years, changed my workout routine, changed my nutrition, changed my birth control, by the end I was brushing my teeth while standing on tin foil to help dissipate the electro magnetic frequencies that were radiating my brain. I put my router on a timer and slept with my phone in airplane mode. I was pretty much convinced toward the end that I had a brain tumor because I had been screened for everything else, in my mind, what else could it be? My symptoms changed at the end which forced me back to a doctor. I was tired of being told I was totally fine other than suffering from stress and depression, but asked for recommendations on FB for an eastern-minded physician because I was over the western side, and was referred to the place I attribute my life too.
Oddly, the doctor who treated me used to come to the restaurant where I was a waitress while going back to college, and I had overheard her say one time that she was putting herself on antibiotics because she found a tick crawling on her. That must have been over 15 years ago but how weird. At the initial appointment, I told her everything I was experiencing and was asking to be tested for certain things, Lyme being one. She said she would order that and a few other things as a starting point. Less than 48 hours later, I had my positive Lyme diagnosis. I am so thankful for it. I tested positive for the type the CDC requires screening for and started on doxy. I took that for almost 4 months before changing over to strictly herbal and holistic treatment.
When I look at the list of Lyme symptoms now, I had so many of them, but went to so many different doctors that none would've had enough info to put it together. Along the way I experienced hives, weird body temperatures, night sweats, insomnia, cracking in my neck, numbness in my face, memory issues, difficulty speaking without stuttering, fatigue, dizziness, hearing loss in my left ear, 2 heart fluttering episodes (that is the one that really made me go back to the doctor)l, difficulty making a screw go in a hole so I was losing physical abilities, I could no longer straighten my arms because of the pain in my elbows, and eventually had numbness in my whole body. But mostly all of that is gone now. Occasionally I have numbness in my face and a strange sensation in my ears, but that's about it anymore.
It has definitely not been a smooth, straight line to where I am now, but I increasingly feel more and more normal. It's been at least 7 years since I can say I feel normal most days and that is very exciting.
You run a support Lyme support group in Pennsylvania. Tell us a little about what it's been like:
Since I have been feeling better, I looked into a support group for our community, and found that none existed. So I looked to surrounding communities to see what they were doing and came across PA Lyme Resource Network. I contacted them to see if they would help me get a group started and they have been my parent organization ever since. I'm very happy to have found a way to not have to recreate the wheel and have local support to assist me getting things going. I had my first meeting about two weeks ago. I was very happy with the outcome and look forward to continuing this group and helping to educate and support my community. We will meet monthly on the third Wednesday of every month from 6-8pm at Atonement Lutheran Church in Wyomissing, PA. This disease is very isolating and I do not ever want anyone to feel alone or crazy. Been there, done that so if I can help others avoid that, I will.
What are your passions?
I am super passionate about nutrition and helping others. I think of myself as a connector, I am really good at getting people in touch with things/people they look for. That is a good feeling. I am also very passionate about healing myself, learning, and expanding as a person.
What is the one thing that you have found most helpful in treatment?
My "tool belt": that is to say that I think all things together have been the most helpful. Every little thing I add in has its benefits. Hitting it from all sides. I currently use herbs based off of Unlocking Lyme by Bill Rawls, dry brushing, lemon water, intermittent fasting, detoxing, bikram yoga, meditation, control my diet to exclude gluten, dairy, sugar, pork (and I am working on going vegetarian), corn, and soy, I don't drink alcohol anymore (I don't even want it, which I didn't think would ever happen, haha), and stay on a pretty regular schedule to include at least 7.5- 8 hours of sleep a night. Oh, and I maintain hope. That got lost for a little while when I was still very sick.
What do you want people to know about Lyme disease?
You must be your own best advocate to have the best outcome. There is a lot of confusion and unknowns yet with this disease so you must find what works for you.
If you could take away one symptom, which symptom would you take away and why?
The fatigue although I don't have it like before. I hated that feeling so much I would think about killing myself some days. It was the worst thing I can imagine having to contend with. It just sucked the will to do anything right out of me.
What are you most grateful for in your healing journey?
People I meet who make this journey more pleasant.
Do you have any advice for the newly diagnosed?
One day at a time, do not overwhelm yourself. Again, there are so many ways to treat, so many unknowns, so many symptoms...do your research and find what works for you. No two Lymies are the same. Don't be afraid to ask questions and to stand up for yourself.
Is there a person who inspires you in the Lyme community? Who and why?
Ali Moresco. She is doing what she can to raise awareness and still struggles with lingering Lyme. She always seems to push through and keep leveling up. Very impressive attitude and being.
Please share a mantra or quote that inspires you:
"I expand in love, success, abundance, and health everyday, and I inspire those around me to do the same." I added the word "health," but the rest is from Gay Hendricks' The Big Leap.
I also like "Everything works out for me."
I'm Kerry and I am a writer and licensed therapist. This is a positive space focused on how to thrive in any situation and the transformative power of illness.