My name is Susan and I have Lyme Disease. My entire family has Lyme Disease. We also have a host of other fun parasites, bacteria, and viral infections; such as Babesia, Bartonella, Epstein Barr Virus, Mycoplasma and more. I’m also extremely sarcastic (notice the use of the word “fun” back there). And I’m completely blessed (and that is not sarcasm!)
The two combined have helped me deal with the last several years in so many ways!
I was diagnosed 5 years ago after my world fell apart; when I became so sick that I couldn’t get off the couch.
I had massive headaches, body aches all over, joint pain, inflammation everywhere, memory loss, symptoms of Bell’s Palsy, brain fog so bad that driving the kids to and school each day became like dodge ball, and a host of other weird things. I spent months going from doctor to doctor, specialist to specialist, getting blood draws and scans. They tested me for MS, diabetes, Hashimoto’s, virtually any auto-immune disease that you could have. Finally, a friend mentioned she thought I had Lyme disease and needed to be tested from a specialty lab to get an accurate diagnosis.
I spent another several months trying to find someone to test me for it, as many doctors said no because if it was positive, they didn’t want to treat me (yes, a hematologist actually said that to me!) Once I was finally able to find a Lyme literate doctor in my area, I was able to get an accurate diagnosis and start a long process of treatment.
I became obsessed with finding out all the information I could about Lyme and all the many co-infections that I had. It became clear that two back-to-back recent surgeries had stirred everything up, and my immune system wasn’t working to fight those little buggers. I learned everything I could about them, and then I realized that my kids probably had them too, and that many of the childhood issues they and I both experienced were most likely due to these infections. I realized that I’ve probably had Lyme most of my life and that I transferred it to my kids in utero. I mean, after all, they are blood-borne diseases, so I did a lot of research and basically confirmed it. I had the kids tested for all the things I was positive for, and guess what? Yup, they had it all too!
Then I read an article about how it can be sexually transmitted and asked my husband to get tested, as well. Yeah, you guessed it…he had it all too!
And so, began a new journey for us.
Our lives became full of doctor visits, blood and saliva tests, a huge supplement regimen, multiple antibiotics and antivirals. We had pill baskets, not containers. My pantry was full of bottles of medicines and supplements instead of chips and cookies. We changed our diets, which that alone almost sent me to a mental institute.
We had a new norm.
My daughter ended up with a PICC line at age 14 for 4 months. I had to administer her meds 4 times a day. She had to get a tutor and was schooled from home. It was her 8th grade year and it was horrible. My son managed to avoid a PICC line, but he was on multiple antibiotics and supplements, had to quit Cross Country because he kept getting fractures and developed costochondritis. He fainted a lot and had migraines for years; now we knew why.
I was managing it all, all while feeling like I was dying!
I could barely think some days and putting together 3 people’s schedules of medicine times, filling pill containers, arranging doctor visits and blood work really took a toll on me emotionally!
I couldn’t read books, because I couldn’t comprehend. I had to read in small chunks. I finally understood how it was for my daughter to learn with all her learning difficulties. It was very frustrating. I couldn’t crochet because I couldn’t remember to count. All the things I enjoyed were too difficult. I had recently signed up for a photography class on line and couldn’t take it because I couldn’t remember how to use my camera settings.
Here’s one little piece of info you may not know: Once you start treatment for these bacteria and infections, you get worse before you get better. You have bacteria die-off and your body can’t detox it fast enough, so your symptoms get worse for awhile. My brain fog was off the charts, I twitched and convulsed sometimes, I was a hot mess – literally!!! Life was extremely difficult and some days I honestly didn’t know how I’d get through it, yet alone get my kids through it. But…and this is the blessed part, I did! We did!
My kids are feeling much better now. They know how to manage their meds on their own when they need them (when they are symptomatic – as the symptoms come and go). My son graduated from high school, went off to college (and then withdrew midway – that’s a whole other story), he’s working a full- time job, is mostly independent (as independent as a 19-year-old young man can be) and is thriving. My daughter graduates from high school this year. She has had such a difficult 12 years of schooling. With severe learning issues, scoliosis (also made worse by the Lyme), and a host of other issues, she has been in so many private and public schools, had multiple psycho-educational and neuro-educational evaluations, weekly PT and OT, speech and language and tutoring over the years, that we didn’t think this day would ever get here. Throw in all the medical stuff due to Lyme that she had to deal with, and we are completely blessed that she survived it all! We are in even in the throes of her learning to drive (YIKES!)!
I’m feeling much better – 90% better! I still have bad days, and my body is still falling apart. I had a full hip replacement last year, I’ve had multiple knee meniscus repairs (my cartilage is deteriorating rapidly) and I’m going in for double knee surgery in a few weeks. I’ve developed asthma, had sinus surgery recently, and a melanoma taken off my back. Some days still SUCK, but my attitude doesn’t anymore! My confidence is better because I started a PT job from home. I’m uplifting and empowering other women through social media.
My business tag line is, “Let your outer beauty Sparkle and your inner beauty Shine!” and through it I’m living life, I’m sharing my stories, my struggles, my wins. I’m able to enjoy travel again, picking up my camera more, working on projects around the house. I’m surrounded by amazing women, friends, family, social media peeps.
We’ve all seen and heard the memes and FB/IG posts about how our vibe attracts our tribe and it’s all in how you deal with the things thrown at you. Well, I’m here to say that it’s true! If you look at my FB posts from 4 and 5 years ago, you’d unfollow me in a heartbeat. I was always positive and upbeat until I got slammed with all this. My attitude was still good through the worst of it, and I’ve always been a fighter, but my thoughts and actions didn’t reflect positivity daily. My posts were almost that of a manic person! I’d be, “I’m going to kick Lyme’s butt” one day and then Debbie downer the next! I’ve learned to become thankful for the little things, as well as the big things.
Great insurance, upbeat FB groups that helped me learn so much, tribes of women that are going through similar issues but are uplifting, friends that brought us meals and drove me to doctor appointments, a husband that had a great job and could continue to work (despite never treating his Lyme at all), therapists, amazing Lyme Literate doctors, the money to pay for visits not covered by insurance, beautiful distractions that kept me busy and focused on other wonderful things! And as I sit here preparing for another surgery by getting an IV Myer’s cocktail to build up my immune system, I feel so blessed to be able to enjoy each day.
Do I break down and cry occasionally? Of course.
I wouldn’t be human if I didn’t. But then I wipe my face and get up and kick butt! Because truly, WHEN LIFE throws you Lyme, you make margaritas and celebrate all the good things that ultimately come out of the bad!
Submitted by: Susan Anders
I have been friends with and following Susan's story for almost a year before she shared her journey here. I knew she had Lyme disease but had NO idea to the extent her and her family had been fighting for their health. I am so incredibly proud of her bravery to share her story here, and I know that it will be a blessing to so many others.
If you or someone you know suffers from Lyme disease and are looking for some encouragement, you can find Susan HERE.
Love and lemons,