Stacey' Lyme Journey
Updated: Mar 31, 2022
· Who are you? Stacey
· Where are you from? Indiana
· How old are you? 39, getting scarily close to the big 4-0
· Family life: kids, husband, pets: I live with my husband and my 5 year old daughter
II. Life before Lyme/chronic illness set in:
· When is the last time you remember feeling good? About 7 years ago
· What types of things did you enjoy doing before you got sick? My husband and I liked to travel, go hiking, mountain biking, and do adventure races. I was an “endurance athlete” of sorts. I was really into road biking, and the last long ride I did was the One Day Ride Across Michigan (~145 miles) in 2015.
III. Medical journey:
· Do you remember being bitten by a tick? I remember finding a tick embedded in my leg probably over 6-7 years ago. I’ve probably been bitten many times and not known with how much I am outdoors. Bugs/insects love me. Mosquitoes, anything that bites, find me and eat me alive.
· What symptoms did you have following the bite? I don’t remember having any symptoms after the bite. It might not have even been that tick that caused me to become ill, who knows!
· Did you ever experience extreme reactions to other bites (flies, fleas, mosquitoes) Yes! We stayed in an Airbnb once and there were fleas, we had to leave early and get a hotel because I was covered in bites and my husband had none. I was so miserable. After mosquito bites I get really red, raised, swollen, itchy reaction. Again, unfortunately, bugs love me .
· Does anyone else in your family experience similar symptoms or has anyone else in your family been diagnosed with Lyme or chronic illness. No, but I will be watching closely with my daughter, as I probably had Lyme when pregnant with her and didn’t know it.
· What was your experience with testing? My current MD was suspicious for mold toxicity, so I was tested for that first. I believe he did a Western Blot as well at some point. His diagnosis was much more “clinical” vs. testing based, due to my history of having every work-up in the book done prior to seeing him, which all came up “clean”. Plus I had already spent so much money on other testing prior to seeing him, I couldn’t really afford a lot more expensive tests!
· When did you finally get diagnosed? Last year, I think maybe October
· What was your diagnosis? Lyme only? Did you have co-infections? Mold toxicity with the gene that makes it hard to eliminate mold from the body (can’t remember what the gene is called), and Lyme Disease. He hasn’t specifically done any testing for other co-infections, though I have worked with my muscle testing practitioner for a long time on eradicating parasites and have since had her test me for a supplement for Babesia, which I’m currently taking. So I probably am dealing with more than Lyme, but trying to go slow since my body reacts so highly to treatments.
· After you received the diagnosis of Lyme, looking back were you misdiagnosed and for how long? I started seeking medical advice ~7 years ago now. I got so many “wrong” diagnoses, but mostly no diagnoses at all. Post-partum depression/anxiety, anxiety, adrenal insufficiency, hypothyroidism, EBV, but mostly “your labs/numbers look fine, and you look healthy to me” type stuff, because they didn’t know what was wrong.
IV. Life after diagnosis:
· How did you feel once you received your diagnosis? A little relieved, at least I know what was going on, kind of. I was starting to worry I as going to die, so hoped that wasn’t the case when I found out about Lyme. But also angry because it had been going on so long and nobody could pinpoint it. I didn’t feel like I should have had to suffer for 7 years plus.
· Did you run into issues with insurance? My insurance has covered nothing but part of an ER visit for chest pain, and then subsequent heart testing.
· Did you experience issues with treatments? Before we dealt with mold, I couldn’t tolerate increasing the herbal meant to help kill the Lyme, or I would feel absolutely like death. Once we worked on the mold, it’s still been very slow, but I’ve been able to increase by 1 drop a week (still not to the goal of 15 drops twice a day yet). I have a 3-week script for antibiotics on my counter, but am too afraid to take them, as I’ve had reactions to other antibiotics in the past (not related to Lyme treatment), and they absolutely kill my stomach. I just try to take things slow and really work on detox methods.
· Were you unable to treat due to financial difficulty covering costs? I definitely feel the financial strain. I worry about money a lot. We’re getting by, and I feel blessed that we’ve been able to get me the treatment that I have, because I know it could be worse.
· What treatments have you tried? So far it’s been all supplements from my muscle testing practitioner, supplements from my MD, some herbals
· What treatments worked? I’m not sure yet
· Did you try any treatments that did not work for you? I think it’s too early to tell
· Have you been seen by a Lyme literate doctor, and do you care to share contact information? I am currently working with an MD in Cincinnati OH.
V. Personal touches:
· How has your life changed since you were diagnosed? I have pursued things in life that I wouldn’t have prior to this (as well as a bad bout with Covid). I can’t exercise the way I used to, but am trying new things to try to be active when I feel like I can (dance, pilates, yoga, walking). I cry a lot. It’s a frustrating journey, and lonely. I hate taking pills, so I get frustrated with the amount that I am taking, but I try to be grateful that I have the access to them as well. Gratitude has been so much more important in my life. I have the strong desire to help others that haven’t been diagnosed especially, but all with Lyme, so they don’t have to suffer as long or longer than I did. I have learned a lot about listening to my body, truly listening, and treating it like the awesome machine that it is. I’ve learned that self- care is so important, no matter what others think about it.
· Has your illness had an impact on personal relationships/friendships? Unfortunately, yes. People don’t care about what you’re going through a lot of times. I already had a small social circle, and now it’s smaller. But the ones that are still around I know are the best ones for me right now in life. There are a lot of “fair weather friends” out there, that only want to be around when life is good. It’s hard trying to care for myself and take care of a 5 year old some days, or a lot of days, but she’s also what keeps me going. I draw strength from her.
· Resources: what websites, books, podcasts, documentaries, songs, or otherwise did you find most helpful? The first website I remember visiting was “Lyme Warrior.” I’ve read “What Lurks in the Woods” and “The Deep Places” and was glad I read both. My husband and I recently watched “Under our Skin” together. I think it really opened his eyes and helped him understand a little better some stuff I’ve been going through.
· Advice: what advice would you offer to other who are on the same journey? If you haven’t been diagnosed, you HAVE to be your own advocate. Don’t be afraid to seek the opinion of 5+ doctors, and don’t settle for a diagnosis that you know isn’t right, or no diagnosis at all. Educate yourself, so you can be your own doctor as well as hopefully having a good Lyme MD. Don’t be afraid to cry, express frustration, anger, grief, etc. Find a healthy outlet for these emotions ASAP, so it doesn’t just build up and explode one day. Find good support groups. Most of my support has come from online/FB groups, because most people know nothing about Lyme or don’t really care. Take your treatment slowly, be kind to your body, it’s doing its best to heal. Have a “warrior” mindset, and never give up!
The information shared on this page is for informational purposes only, it is opinion and should not be taken as medical advice. Always consult your medical provider for medical advice and before starting any new treatment.