In this blog I will interview people who have been touched by Lyme disease or have insight into Lyme disease treatment or natural health. This series will be entitled, "The Lyme Interview."
Here are my sample questions, which may change based on the interviewee. For this first installment I have answered the questions myself.
Who are you?
My name is Kerry. I live in Chicago, Illinois. By day, I used to be a high school social worker, now I work as an academic counselor at a university.
What are your passions?
I am passionate about many things. My two loves in life are writing and reading. I also love practicing meditation and yoga. My family and my friends are my everything. My main goal in life is to travel the world and experience as many new things as possible. I’m a hobby hoarder, so I like decorating my house, knitting, shopping at thrift and antique stores, singing, dancing, you name it. This is a picture I took on our travels to Ireland in 2013:
How long did it take for you to get a diagnosis, what other diagnoses did you receive, and how did you get your diagnosis?
My symptoms started showing up when I was 22, but my only recollection of a tick bite was in elementary school. From age 22 to 34, I saw hundreds of health professionals - doctors, chiropractors, and physical therapists - for numerous ailments. My only official diagnoses in that time period were two autoimmune diseases, Grave’s Disease and Anklosing Spondylitis.
I finally got my diagnosis in 2016. I refused to stop digging until I had an answer. It was costly, heartbreaking, and extremely time consuming, but it was worth it. I am positive for Lyme through Igenex testing and the iSpot test. It was such a relief to have these documents that explain my symptoms and my heart goes out to people who have debilitating symptoms and struggle to get a diagnosis.
What was your lowest point and how did you find your way out of it?
My lowest point was the summer of 2015 when my conventional rheumatologist and infectious disease doctor received my MRI results. They debated back and forth about whether it was an autoimmune response or an infection. I kept sending them messages and calling and finally they just stopped calling me back. It was a clear indication they had no idea what was wrong with me and no intention of running any more tests. I felt lost. However, it was out of that experience that I found my integrative medicine doctor in Chicago, who referred me to a specialist in Wisconsin. Without those two people I may have gone years before a diagnosis.
I live by the principle: "Don't waste your pain." I found my way out this low point, because I knew I could use this experience to learn how to heal and become a more whole person.
What is the one thing that you have found to be the most helpful in treating your disease?
Antibiotics. It is night and day. But I'm also listening to my body and knowing when it is time to push and when it is time to take it easy.
What are you most grateful for in your healing journey?
I’m grateful for the wake up call. This disease reared its ugly head at the exact right time in my life. I’m also so grateful that through the long process of getting a diagnosis and starting treatment I realized I need more balance in my life. I’ve also said, “yes,” a lot more. Instead of spending months deciding whether or not to take a vacation, only to finally decide not to go, I’ve started saying, “Let’s do it!”
What do you want people to know about Lyme disease?
All I want people to know is that chronic Lyme disease exists and it is not easily treated by 28 days of doxycycline. It is extremely common and there is very little money for research on better ways to diagnose and treat the disease. I believe we are on the cusp of a cure and that when we find it there will be huge breakthrough in medicine.
Also, please protect yourself, your children, and your animals from ticks.
What is your favorite quote or a quote that you life by or defines your experience with Lyme?
I have two favorite quotes right now. They are both guideposts for me on how to live my life:
“All we have to decide is what to do with the time we are given.” - J.R.R. Tolkien
“In the end, only three things matter: how much you loved, how gently you lived, and how gracefully you let go of things not meant for you.” - Buddha
I'm always looking for new stories and perspectives on Lyme disease, healing, and wellness. If you are interested in being featured on "The Lyme Interview" follow this link to my Connect page.
“There are only moments. Live in this one. The happiness of these days.” - Kate Millett
When is enough, enough?
Under Our Skin came out 7 years ago in 2009, and aside from small victories, things are very similar in Lyme disease diagnosis and treatment. I’ll give you an example from my personal experience. I was in the hospital for a flare up of my chronic co-infection of brucella, which is recognized by conventional doctors, as opposed to chronic Lyme. Now, during this short hospital stay I was seen by an infectious disease doctor who said to me, “Lyme is cured in 28 days, so you don’t have that anymore.” I was at the top hospital in Illinois and this person is supposed to be an expert in infections yet she had no understanding of one of the most common and fastest growing infections in the country.
It’s astounding to me that with so many people are speaking up, including well-known celebrities, no one hears us. This film is a voice for the silent sufferers of Lyme disease.
The film follows a few specific cases of Lyme. The one that stood out to me was a young, vibrant woman, who had severe Bell’s palsy and frequent seizures. She was referred to a psychiatrist and told it was all in her head. I don’t know how anyone could fake Bell’s palsy and seizures. Her desperation was heartbreaking.
There were some moments in the film that I could relate to:
One featured patient travels with U2 on tour. At one point she said, “The hardest thing is everybody thinks I’m normal.” On the outside she looked perfectly healthy, but she was walking around in constant pain. I can relate. I look very healthy, no one would ever know I was sick and people who know I’m sick often forget that I have certain limitations. The other issue with this is that Lyme patients have good days and bad days. On a good day I could run a mile and have very little pain. On a bad day I feel like getting out of bed and taking a shower is the equivalent to running a marathon. Thankfully, with antibiotic treatment I have fewer and fewer bad days, but not all those with Lyme disease are so lucky.
Another patient recalls a time when a doctor said, “You don’t have Lyme Disease.” Hearing this struck a huge chord with me, because one year before my diagnosis, through Igenex testing and the iSpot test, a doctor said these exact words to me and refused to conduct a simple blood test. I don’t know if a conventional ELISA or Western blot would've been positive, but I know in my time as a “undiagnosed” patient I had never been refused any other tests. It makes me wonder why the doctor was so adamant that I didn’t have Lyme.
The movie left a bitter taste in my mouth. I’ve said many times that all I wanted was a diagnosis, not a controversy. But on the other hand the Lyme community is so incredibly supportive. I know we will stick together and find a way to be heard.
There is one point in the movie when a doctor says, “We’re going to learn more about chronic illness.” This is one way to look at the controversy in a positive light. I think as we solve the mystery of Lyme disease and other chronic infections there will be a breakthrough in conditions previously thought of as incurable, such as certain autoimmune diseases and Alzheimer's disease. In my opinion many of these conditions are caused by chronic bacterial or viral infections and can be treated through antibiotics or, preferably, another safer treatment we have yet to discover.
The movie runs 144 minutes and you can stream it on hulu for free with occasional ads or buy it here to stream on Amazon:
This is a must see for any Lyme patient and those who love us.
“You can damage the brain, you can damage the body, but the center of...the person you meet...she was whole.” - Karen Cavanagh
“Come, let us have some tea and continue to talk about happy things.” - Chaim Potok
And that is exactly what I plan to do.
After water, tea is the second most consumed beverage in the world. However, in the United States we are loyal coffee drinkers. That’s why it is so difficult for those of us with Lyme Disease to give up coffee when the time comes. The Lyme Diet, like many other anti-inflammatory diet protocols, advises against coffee due to the caffeine. The good thing is that after you shake the addiction tea is a lovely substitute.
Like coffee, tea is inexpensive, easy to brew, and warms your insides. I start every day with a cup and usually brew another during the mid-day adrenal crash. Sometimes I even have a calming cup before bed.
These are my personal favorites:
My go to tea, because it is always caffeine-free. Here are some great options:
1. Trader Joe’s Organic Chamomile Herbal Tea
A dependable, inexpensive option with nice light, flowery flavor.
2. Equal Exchange Organic Chamomile Tea
A pure blend with pleasing aroma and taste. You can feel good about drinking it because it is organic and fair trade.
3. Tazo Calm Chamomile
A little more expensive, but a very smooth taste. The best part is you can taste the rose petals, which are part of the blend.
For the Gut
I like to drink gut healing teas daily, such as, mint, ginger and licorice root. Here are some good ones to try:
4. Trader Joe’s Herbal Peppermint Tea
Mint tea is a good alternative to coffee. It has a definite “pick me up.” It also has the added benefit of settling the stomach.
5. Yogi Ginger Tea
This ginger tea has just the right balance of ginger. It’s not too strong, but it has a slight kick. This tea was a lifesaver when I was having strong nausea related to Lyme. I had 3 cups a day for 3 days and my nausea was gone. The other wonderful thing about Yogi tea is that each teabag has a “Yogi Inspiration” on the end. You can also write your own and post it on Twitter using #yogitea.
6. Aveda Comforting Tea
This is a tea a worthwhile splurge. I always ask for a cup of it when I go to an Aveda salon for a haircut. It’s an herbal blend, but the primary flavors are licorice root and peppermint. It is so sweet and decadent you won’t even notice the healing powers. And it smells amazing, too.
Then, there is Chai. Probably my favorite flavor of tea, but not always decaffeinated. Here are some decaf ones to try:
7. Tazo Decaf Chai
A rich, flavorful tea, that is an excellent substitute for coffee. Unlike some chai teas, which can be overwhelming, all the notes in this chai blend together for a taste that is both subtle and spicy.
8. Teavana Oprah Chai Herbal Blend
I loved Oprah’s Chai Tea blend at Starbucks when it first came out. I also loved the Oprah’s Chai Tea Latte, because it had less sugar than the regular Starbucks Chai Tea Latte. Now Teavana and Oprah have developed a caffeine-free version for those of us who have given up caffeine. It is a loose leaf tea, so it requires a tea infuser, but that makes it even more special.
I'm always looking for new teas to try. What is your favorite caffeine-free tea?
“Where there’s tea, there’s hope.” - Sir Arthur Pinero
I'm Kerry and I was diagnosed with chronic Lyme disease in 2016. This is a positive space for those of us coping with Lyme disease and other invisible illnesses.