As I write this, I can hear the neighborhood children playing outside my house… rolling around in the grass and squealing. I am a firm believer that children should spend as much time in nature as possible – in order to respect and cherish something, you need to know it! – but it is very important that children, and their parents are mindful of some of the risks…
The month of May – today being the last day of it – was Lyme Disease Awareness Month in many states, including my state of Maryland. The timing is significant since more people are spending time outdoors with the warm temperatures and sunshine. People love to be outside in this weather soaking up the sun, socializing at cookouts, hiking through the woods; on the same token, it is during this time that ticks – the insect that carries the Lyme pathogen – begins to thrive.
I have mentioned my struggle with Lyme disease (and the related disease that I also contracted) on my blog before, but never in any kind of detail about how it affected me. At first, I thought it would be burdensome to read about illness, but as a sort of public service announcement, I believe it bears repeating…
Kris and I go to the Eastern Shore of Maryland each June and spend a few days at the beach with his 
parents. For the last several years, we have taken our bikes along and have sought out some mountain biking trails en route to the beach. The Eastern Shore of Maryland and Delaware is a beautiful place with several forested areas and waterways to explore. Kris and I stopped at one of the state forests near Salisbury last June (photos from that day) and biked around the park for awhile and snapped a few photos.
I was aware of Lyme disease, and made an effort to wear long pants and to tuck my socks into my pants (there was a lot of underbrush). I was wearing a t-shirt and a bandana on my head, and was also carrying a small lightweight backpack with my camera and canteen. We stayed for a few hours and left with some mosquito bites and a healthy appetite. We drove another hour towards the coast, stopped at a farmer’s market to get some food and ate outside (we were still kind of sweaty…) before meeting up with Kris’s family. Neither one of us immediately rushed to the showers, instead staying outside longer – Kris went fishing with his brother and I sat out and played with the nieces and chatted with my mother and sister-in-law. It was probably about 6 to 7 hours later that I undressed and discovered the small specks all over my legs. Upon closer examination, I realized that the specks were actually ticks. They covered my belly and upper legs to my knee. We stopped counting around 15. 
I stayed calm, and Kris and I got them out and didn’t worry too much more. Over the next day, I found a few more specks (no larger than the head of a pin – these were very small deer ticks) We didn’t find any visible specks on him, even though he was with me the whole time we were in the forest.
Fast forward about three/four weeks – Mid July: I notice a small patch on my left thigh. Not quite the “bull’s eye rash”, but definitely an abnormal splotch. I ignored it for about a week, then I begin to wonder if it might have something to do with the tick bites. I scheduled an appointment with my general practictioner and he immediately noted it as abnormal and sent off for a Lyme blood test. …weird thing was that my first test came back negative… It was about that time that I began to have some serious symptoms: serious joint pain, especially in my jaw and neck, tingling and numbness in my legs and arms, serious heart palpitations and shortness of breath (not while doing any exercise or anything physical). My doctor went ahead and put me on some antibiotics and wanted me to see a cardiologist and a pulmonary specialist. I spent a whole afternoon in the office getting a battery of ultrasounds and -grams tests… but things just got worse, even with the medicine. Quickly my memory was fading, and there was a serious broken link between my brain and my mouth. I could not speak what I was thinking, and the numbness in my legs and arms increased so much that they felt like dead weight. …and then I seriously thought I was going to have a heart attack because of the persistant palpitations and shortness of breath…
Kris and I were seriously scared. I woke up each day wondering what was going to happen next… and I am not exaggerating… whether I would wake up at all. It was a very scary time. I am so grateful to Kris for his help during this period – it is still so foggy in my mind – he did research and found out that what I was experiencing was very real and was undoubtedly related to the tick bites. He found a doctor that specialized in Lyme and related co-infections and made an appointment with me. He had to drive me there and help me into the office – I was not able to do it myself. He came in to the room with me and as I sat there in my fog, he told the doctor what had happened. I chimed in when I could.
What I experienced was a very quick set-in, undoubtedly from the sheer number of ticks that bit me. Immediately, the doctor clinically diagnosed me with Lyme and a blood test confirmed that I also contracted a blood disease from the ticks called Babesiosis. Looking back now, I realize that it was because of the diseases, but also many of my unhealthy habits – specifically diet-related - that made my illness so bad so fast.
By the middle of August, I was on a very strict treatment plan that included many drugs – some to treat the diseases, but some others like supplements to treat some of my underlying issues like vitamin definciencies. Using a holistic approach, my doctor also encouraged a strict diet and some mild exercise …and within a matter of weeks, I began to feel so much better. Like SO much better… better than before I was sick. Things were brighter and smelled sweeter. No more low lows and depressive periods. I even had the added benefit of losing about 40 lbs.
Every 3.5 weeks, I had to go to the lab to get my blood taken for tests to determine my levels, and each month I saw my doctor. She and I were both so happy with my quick turnaround. My treatments were long and tedious – at one point I was taking 26 pills a day – and I had to be very disciplined.
…Last week – just shy a month of when I contracted the illness from the ticks – I took my last antibiotic treatment. I am maintaining my supplements, but it feels so good not to take all of the serious medications after nine months of treatment.
The research on Lyme is still very minimal, and it is a controversial disease. It is often ignored for years by both the patient and the doctor. My doctor encourages me to pay very close attention to how I feel (and I still continue to see her although not as frequently) because Lyme is never 100% cured. Lyme can “lay dormant” in some people for years and when their immunities are down for one reason or another, some symptoms can come forward. It is a mysterious disease, but one that can be treated to make the patient have a better quality of life.
My experience with this disease was definitely not as severe as some cases that you hear or read about… but I caught it early. Some people are misdiagnosed or go undiagnosed for decades.
You may have heard a bit more about Lyme Disease this past month – several major news reports came out both on the TV, newspapers, the radio, and on the internet. My favorite magazine, Experience Life, had an amazingly informative and comprehensive article this month – the author is a science writer, but her and her whole family were ill from Lyme for years before they were treated. Read the article here.
It’s about being mindful – isn’t it always? Paying attention to what is happening both around you and in you. And it is not about living in fear either… don’t let this scare you from going outside! It hasn’t done that to me – I garden, hike, bike, and spend as much time outside as I can. Just check yourself, your loved ones – even your furry friends – for the little buggers. … and if you find them, don’t squash them. Simply extract and flush them. Then pay attention to any symptoms.
If you read this entire post, thank you. I feel like this information needs to be out there.
Best wishes~
Very interesting and informative. Thank you!
Thank you for sharing your story. To many times we ignore the things that are wrong with our bodies – I did it for awhile with my galbladder. I am glad you are feeling better and that you have a partner like Kris to help you through the rough times.
Lolly, thank you for sharing your story in such detail. I feel better informed and will be more careful as a result.
Lolly, thanks for sharing your story. I am so glad that you are doing well.
It is so good to hear about the role that Kris played in your treatment. I have been in that role with Michelle in the five years since she was diagnosed with Rheumatoid Arthritis. It’s not often that people marry/ settle down as young as Michelle/I and you/Kris did and it’s especially unusual for such a young spouse/partner (God, I wish I could marry Michelle!) to be in this caregiver role. You have such a beautiful marriage.
Also, I am inspired by how healthy your life has become over the past few years. I am going to continue to check in with your blog posts for inspiration to go to the yoga class that I haven’t been to in months and as a reminder of how a healthy diet can make such a difference. You look FABULOUS!
Hugs!
Lolly – thanks for putting this out there. My cousin in Nevada went thru an eerily similar course as yours, being VERY sick before anyone could figure out that it was Lyme disease..l, and he is now in the middle of a long recovery. Scary stuff, thanks for the PSA!
I’m so glad you’ve been doing so well! I remember when this first happened, although I don’t think I realized how bad it really was at the time – it’s so scary and something that could happen to anyone so very easily. I think it’s great that you’re sharing your experiences and reminding us all to be aware!
NOT the way to go about losing 40 lbs, m’dear. So glad to hear you’re finally done with the antibiotics, and that you’re doing so much better.
Wow! I knew you had been sick, but I had no idea it was so bad. I’m so glad you were able to get treatment and are feeling good again. We have ticks here, but nothing like that – probably because we don’t have as many densely wooded areas, but it’s still good to be aware of what could happen. Thanks for sharing.
Thank you for sharing your story, Lolly. I’m glad you’re feeling better.
Wow, Lolly. I had heard that you had Lyme disease, but had no idea it had hit you so hard. I’m so glad you found the right doctor to help you get through it–and SO glad you’re better! Thanks so much for telling your story–all too often, Lyme disease gets a shrug and a “well, it’s curable now” dismissal, but it needs to be taken seriously!
Years ago, I worked in a residence for developmentally disabled adults. One of our residents was a man in his 30′s who had lived there quite a long time. He grew up “normal” and healthy, and was incredibly smart. He graduated high school with a full scholarship to MIT. In the summer after high school, because he left for college, he went hiking and ended up with untreated Lyme. By the time I met him, he was completely unaware of his surroundings and eating through a permanent feeding tube.
Knowing him and his story has made me always take Lyme very, very seriously.
I’m so happy for you that your story ends well. Thank you for sharing it with us!
Thanks for sharing all of this information. I would have freaked out seeing more than one bug stuck on me. I’m glad you are feeling better and that this has brought healthy changes your way. Yes, it is always about mindfulness. Stay well.
I am very sorry that you have had to deal with this. Would you mind sharing some of the diet changes that you had to make? My brother in law also has lyme and I would like to be able to cook for him in a healthy way
Lolly, I’m so glad you’re well now. My dad had three open heart surgeries in two months because of pericarditis he contracted from tick-borne disease. I don’t remember now if it was from lyme or rocky mountain spotted fever, or if they’re the same, but we are very very careful about ticks.
Thank you so much for sharing this with us. What a frightening time for you, but you appear to have handled it with the same grace you apply to everything. I’m in the woods a lot and am always worried about ticks. I will remain vigilant!!
Lolly, what a wonderful picture of you two. Thanks for your post. Congrats on going to the olympics!
Very informative! Thanks so much for sharing your story.
So glad you are all right. Good that you paid attention. Thank you also for all the information.
Thanks for sharing your story and for the reminder to be checking for ticks…this said as I finish packing for a trip to our cottage in the woods!
So glad you’re feeling better than ever! I’m glad you have each other – there’s nothing more important in times like illness.
Thank you for sharing! I have a friend who has been suffering with lyme disease for the past ten years. Unfortunately it was ignored by her family doctor until it had spread to her cerebral linings… and now it will be terminal.
She is constantly struggling to feel well and recover from new ’bouts’ of symptoms. She does a lot of holistic approaches, but unfortunately exercise is very difficult for her weakened body. Because of her I am much more aware of Lyme disease and what it might look like…
Again, thank you for your story.
Blessings
Every time I see a tick, I think of you. Isn’t that nice?
I’m so glad you’re doing well now.
Wow, I had no idea! I’ve known people with Lyme in the past, and been tested for it multiple times due to my recurring joint problems, but I’ve always come back negative. I had no idea it could be as bad as you had it! Seems like every person has a completely different version of it, no wonder it’s so hard to diagnose. I’m glad to hear you’re doing better, it sounds like you found the perfect doctor — and having been through more than my share of THOSE, I know how priceless it is to find a good one! Here’s to your continuing good health!
My daughter was diagnosed with Lyme and took antibiotics. I never knew it can lay dormant. I will talk to the pediatrician about this —thanks!
Thanks for writing this. I grew up near areas with ticks and had always heard that Lyme disease was a risk, but it was so abstract. I never knew all the effects it can have! Thanks again for sharing your story. I’m glad you’re feeling better.
I’m so glad that you’re sharing your story. Spreading as much information about this disease as possible is really, really important so that people know how to protect themselves.
What a turn around you’ve had this year! You seem so much happier and healthier! Even though when it was bad, it sounded like the worst time of your life, it sounds like the struggles has reaped some rewards. Love, happiness and health to you, my friend.
xoxo.
I’ve been reading your blog for YEARS, and I don’t think I’ve commented before, but I just had to say that I’m so glad you’re doing better, and that you’re feeling better than before. I had no idea what lyme disease was really about. Thanks for sharing!
I have been reading you religiously. I knew you had some health issues but your upbeat and zest for life so outweighed any reference you ever made to your illness. Thank you for one of THE best blog posts I have ever read. I will share it with everyone I know. It was that profound.
I wish you and Kris continued good health, good times and happiness always.
a p.s. to my comment…please don’t hold it against me that our son is a Detroit Red Wings fanatic. (Contrats on the Penguin victory tonight though!!!)
I’m another fan who reads your blog and never comments. I really want to tell you that I admire your discipline and tenacity to do everything possible to get better. I’ve done the diet part before for other reasons, and it is very difficult to cut so many things out of one’s diet. I’m glad you feel so much better! I will continue enjoying your blog.
so glad your outcome was so good.
and that you are feeling better than ever!!
go yoga!! xx
Thank you Lolly for that superbly informative post. I am glad you are getting better and are healthy now. And you guys look lovely together!
I have never heard of someone having so many ticks at once! I have had friends close to me, and also my mom’s horse, had lyme. I am glad to hear you are feeling better than ever. Must be the yoga
(Still haven’t done your sequence, I will, promise!)
Thanks for posting this great information!! I have actually worked on the genome sequence for the deer tick over the past few years, and feel very strongly about awareness of lyme disease/deer ticks. It really stinks that you have had to deal with the disease, and am glad that you’re doing better now. People really don’t realize what damage it can cause. Thanks for using your blog to get the info out there.
Wow – I never knew how bad your case was. Definitely scary. Thanks for posting this – i will definitely be more careful when walking in the woods.
So glad you are back to yourself again!
Thank you for continuing to educate us about Lyme Disease. Until you got sick, I had no idea how awful the symptoms could be, and how much work it would take to get better. Now I know!
Wow – what an awful experience – so glad to read that you’re doing so well. I thought I knew about Lyme disease (former Marylander and always knew to watch out for ticks) – but your information is really helpful (and pretty scary.) thanks for sharing your story – you’re helping a lot of people by putting it all out there –
I’m so glad you posted this. It’s so important for people to be aware. I’m so sad that you went through such horrible pain! I knew that you were sick but I had no idea! I’m also very glad that you better. wow. what a year for you!
Last year about this time I had a scary tick expericence. We went hiking at one of our favorite local spots, walking around the grassy areas without a care in the world. When we came home we both felt kind of itchy and we checked and ticks were crawling all over both of us. In our hair, on our bodies. We just freaked. We both took showers and, thank god, none of them bit us. I was till rinsing stray ticks off of me a few days later. Raf flicked one or two off of his shirt and they must have been crawling around. icky! It gives me the heebie jeebies just thinking about it!
Excellent post and reference article. Thanks so much….glad you’re post-treatment and fully Experiencing Life!
Wow! thanks for all the info and relating your experience with lyme disease. glad to hear you are feeling better!
Wow – I hadn’t realised the extent of your symptoms, or how very seriously ill you actually were. So glad that you are so much better now.
I am so glad you are well and healthy today! Thank you for sharing your experience.
Thanks for this post about Lyme’s – it was very interesting to hear your story and I am happy your recovery has went well thus far. I had no idea how sick you were!
I am in NoVA and grew up in NY so I have always been educated on ticks – I remembered all the Lyme disease info becoming really “hot” to teach when I was in grade school – 20+ years ago.
It’s also important to note that dogs can also get Lyme’s – and it generally presents with a variety of puzzling symptoms. Even if your dog is on flea & tick preventative, it’s not 100%. My vet does a blood test 1x per year to check for it anyway; and recently I know two friends whose dogs were declining quickly and suddenly and it turned out to be Lyme disease. We should all be aware of the risks for us and our furry companions.
Thanks again for the post.
Thanks for that post, Lolly. I found a tick on me last year after going mushroom picking. I pulled it off and thought not much of it. Still, the bite didn’t seem to heal, so a few months later I went to the doctor. Luckily there was a nurse at the office who had lived and practiced in a tick-dense area and was able to reassure me that tick bites sometimes take months to a year to heal. They still tested me for Lyme, though, as a precaution.
Thank you for sharing your experience with Lyme’s disease. I must admit that while I had heard of it, I knew nothing of it and it has certainly increased my awareness . Thanks a bunch
I contracted Lyme disease back in later 1999, in central Ontario during a camping trip, and approx. the first year the disease had moved that far up into Canada. Lucky me. I was canoeing with a guy I was trying to impress at the time. I developed Gullain-Barré Syndrome, triggered by the Lyme (which we found out about 2 months into my ‘main’ illness), and spent a year off work. I was a mess. Couldn’t walk much, hard time breathing, eyesight blurry, all due to muscle weakness, no fine motor skills, huge loss of muscle mass. GBS mimics Multiple Sclerosis, except you recover. All better now, and finally am able to wear high heels again just this year. I had doctors who found the Lyme part relatively quickly. Maybe even luckier I developed the Guillain-Barré, hellish as it was, because without that, I might’ve lived with Lyme undiagnosed and at an increasingly severe level for many years after. (The GBS rendered me unable to knit and crochet for a long time due to my curled fingers, but I got that back no problem
Thank you for sharing the details of your illness, Lolly. I knew it was bad, but WOW I had no idea how bad. I’m so glad you got help when you did, and that it made such a difference. I am so glad you are in such a better place now.
Thank you for sharing your story, and for reminding me to be more careful when I go outside. I spend so much time hiking in the woods, but I rarely think to check myself for ticks. I will definitely be more “mindful” while still enjoying my beloved outdoors.
And I love that beautiful photo of you and Kris. It really highlights the love and vibrancy you two share. It made me smile.
thanks for posting this Lolly! Gosh I am so sorry to hear that you had to go through all of this. How scary. I am certainly glad to hear that you are O.K.
I so enjoy your beautiful posts and pictures. Take good care!
Thank you for sharing–especially the details. My son contracted Lyme’s from a tick bite at 1 1/2 yrs of age. The doctors only gave him antibiotics for 2 weeks since he had a negative result to the test for Lyme’s (even though he had a bull’s eye rash). He has been subsequently been diagnosed with Apraxia of speech which means that the connection from “mind to mouth” is impaired. I am still convinced that it stems from the Lyme’s. I myself contracted Lyme’s and had a bull’s eye rash, and within a few month’s was diagnosed with premature menopause (at 32) due to autoimmune problems. Then a few months later had more MS-like autoimmune problems. Lyme’s is serious. DO your tick checks!
Side note: we went to Disney World last week and found a tick on my son (before it burrowed). Yes, they even have ticks in Florida!