Gradually, I started feeling very “off”. Symptoms multiplied as weeks wore on. I’d have the will to be active, but physically couldn’t keep up. We were worried. Would I ever feel like myself? Was there something doctors hadn’t found?
I felt mentally “slower”, absent-minded. I’d forget what I was saying mid-sentence. I’d teach knitting lessons I’ve taught for years, but stumble on my words or how to do a particular stitch. Blogging, I’d get stuck trying to find the right words.
I was tired, but didn’t sleep – no more than four to five hours a night for a year.
I’d sometimes stutter, something I never did before. I got winded easily.
If I was on the right medication, taking it correctly, if my thyroid “numbers” were where they were supposed to be, then why did I feel awful? What was it?
Always Mother Hen, I find difficulty asking for help when it’s me in need of a helping hand.
Only a few close friends knew what was happening, but it was becoming too difficult to hide how I felt. On really bad days, I felt miserable. On good days, I tried to be my “old self”, but rested frequently. It was like a frustrating hamster wheel.
I saw several different physicians, and felt like a hypochondriac. Insurance-weary doctors pressed for time would read my chart, see “Hashimoto’s” and dismiss me. One told me I was “over forty… it’s down-hill from here”. One even suggested my illness was triggered from the stress over the Sandy Hook shooting! Others agreed something else was going on, but couldn’t pin point it. The medication I was on wasn’t helping me feel better. I felt as if I spoke but the doctors couldn’t hear me.
One doctor promised to switch me to a naturally-derived medication if I tried being gluten-free for six weeks first. I did as I was told. (I also tested negative for Celiac disease). I found it frustrating and was always hungry. I felt it difficult to stay gluten-free and organic/preservative-free simultaneously. (I did realize I was eating a lot of gluten)! I felt better at first (from less carbs), but soon was miserable, yet I wanted to switch to the naturally-derived medication. Returning to the doctor six weeks later, the doctor decided not to change my medication after all. Going gluten-free didn’t change anything for me at that point, in fact, my thyroid antibodies increased.
One day my husband had a new client, a scientist working for a pharmaceutical company. She told him she thought I sounded like a “Lyme” patient, who’d had it too long and was having it wreaking havoc on me. She recommended a doctor friend specializing in chronic Lyme.
Eight months of near-daily calling and begging for an appointment (they were booked solid but added me to a “wait-list”) their office recommended another doctor who might help. Soon, we had an appointment.
My husband went with me to see the new doctor, who listened without judgement, even working with me through his lunch break. After some discussion, he asked a series of questions, broken into four sections; a score over 46 “points” was a good indication that Lyme may be present. I scored almost double that in the first section alone! He ordered more thorough blood testing (not all tests represent all the possible “bands” for tick-borne illness). I was positive for Borrelia – the ‘22nd band’ was positive.
Ick! Dog ticks. The worst ones, however, are the tiniest deer ticks that are next to impossible to see!
Deer are a constant presence in Connecticut suburbs. This one was in my yard and did not seem too concerned that I was there, too.
He prescribed antibiotics (that I’d take several weeks), discontinued the medication I was taking, and started me on several homeopathic supplements. Soon I felt relief not felt in months. At first, my skin tingled, and because of the antibiotic; I had to avoid the sun completely. My energy soared, I was clear-headed, my aches disappeared, my stomach woes stopped. Soon I was back to being bouncy and energetic! Those close to me noticed.
I finally felt able to do everything I want to do, after a very long “journey”. Health is so important, and life can change on a dime.
After a few months, I was “me” again! Following up, my thyroid is working again (med-free, over a year later). After another tick bite in the fall, I ended up with similar symptoms, but after antibiotics was soon back to normal.
This is Japanese barberry(Berberis thunbergii), now on the Connecticut Invasive plant list. It’s everywhere! Studies have shown it creates the perfect environment for ticks carrying illnesses such as Lyme disease. Our goal is to rid our property of it – a very difficult task.
I am much more careful now outdoors! My daughter says she “got her mama back”. I’m active physically and mentally, grateful that my persistent husband and a kind, thorough doctor didn’t give up. I still need to lose some of that weight, as well as continue to be mindful of how I feel and be closely monitored by my doctor, but for the most part I can say all is positive.
I love this picture of my daughter and me at the holidays. We ended the year on a great note, and I am feeling like “me” again.
I learned when it comes to health, don’t give up, do your research, and be your own advocate.
I have since met so many people like me that have suffered due to a tiny little tick, and the season is in full force. Being outdoors is a wonderful thing, but watch for ticks. They may be small but can cause a huge impact…I never would have imagined just how much.
Until Next Time…Farmgirl Hugs, Nicole
www.facebook.com/suburbanfarmgirlblogger
Nicole,
WOW!!! Living in “tick country” myself, I’m really glad for this blog post as a reminder to be very aware. My husband and I do a little “tick check” on each other every couple days during these months when we are working outside continually. It is hard to see those little things yourself sometimes.
I’m so thankful you kept at it and didn’t just lay down and give up. I’ve found that we are our very best advocate and if we don’t take responsibility for our own health, very few will. (I also have a husband like yours that is there in the background pushing for answers.) I’m so happy you got answers, got help, and got your life back.
And the weight you think you need to lose? Keep it. You look fantastic! 🙂
Thanks for this post. I’ve been trying to patiently wait for Part Two! Glad for the happy ending! Big hugs,
– Dori –
Hi Dori! Thank you, thank you…you are so sweet!
One more word on ticks…the worst ones are the ones we don’t always see! The little deer ticks are soooooo tiny! Keep vigilant in doing tick checks. It’s so important.
Farmgirl Hugs, Nicole
Yay for healing. I’m glad you are mended!
Thank you, Susabelle! Farmgirl Hugs, Nicole
Congratulations! You have a disease and you know how to handle it. I am so happy for you. Now you have a new normal to deal with but you’re much more energetic and can carry on. I’m rooting for you.
Hi Adrienne, Thank you. I still read as much as I can on Lyme, ticks, and thyroid issues. Right now, thirteen months after going off the medication, my thyroid at my last two blood tests was in normal range. I just KNEW something else was going on. I also should add that I never, ever remember getting any ‘bull’s eye rashes’, even though I know I had ticks on me. I am just so thankful I found someone who would listen. Thanks for reading…Farmgirl Hugs, Nicole
Such an inspiring story with the best ending.
So glad you stood up for yourself and kept searching for the right answers
and diagnosis and you won!!
Ive been praying for you from Noel, Mo…..Sending hugs from the Ozarks, Diana
Hi Diana! You are so sweet. Thank you for your prayers. I have many blessings to be thankful for, that is for sure. Farmgirl Hugs, Nicole
Huraaaaaah Nicole! Finally! Thanks be to God! I had been misdiagnosed for over three years by 7doctors for a b12. Deficiency It’s called pernicious anemia! It is an auto ammunition also! I have to take injections of b2 ! My body will not absorb it! I was having ALL kinds of issues! By the time a neurologist found it! It was a simple b12 blood teats! It left me with permanent nerve damage! I still have tremors and severe neuropathy in my feet and legs! Left untreated ,I would have had permanent brain damage soon! Thank God! I was treated by an internist in the Bay Area! She knew exactly what it was! So many doctors missed it! If you are interested you can look up! I had every classic symptom! So hard to understand all of these doctors missing it! Well! You are on the mend! Congrats and God bless to you! YES ! You need to be your own advocate! I fully agree! Take care,Cindy
Hi Cindy, Oh your poor dear! I am sorry to hear you went through that. I am so glad that you were diagnosed correctly after being misdiagnosed. I think that doctors nowadays have so much on their plates with insurance, etc. and not enough time sometimes. It also seems like there are more issues we humans have than generations before. Blessings to you and your continued health! Farmgirl Hugs, Nicole
Not b-2 sorry misspelled! B- 12 ! It runs our entire nervous system !
Got it, Cindy! Thanks! Big hugs!
I have heard so many stories like yours, and it amazes me that the doctors are so slow to figure this out. Glad you are better and thankful you put it out there for others to read!
Hi Janice, I agree. I have been amazed at the number of people who sound just. like. me. I hope writing this blog may help someone else like me. Thanks for commenting! Farmgirl hugs, Nicole
So happy to hear of your ‘return’!! God bless and I hope the ridding of the pesky plant helps.
Hi Joan! Thank you, sweetie! It grows everywhere in my area, but it is a start! Farmgirl Hugs, Nicole
That’s great. I’ve had a lot of health issues and the worst part is not knowing what is wrong and IF it will ever get better or worse, not knowing what’s around the corner. So I’m glad to hear you found an answer and a solution! If you don’t already have any, you might want to consider getting chickens (or guinea hens). They are great at getting rid of ticks in your yard. My dog got Lyme disease twice before we got chickens, and never again since then. Just a thought. And it sure doesn’t look like you need to loose any weight, you look great!
Hi Elisa, OH! Thank you! I am short, so even a little weight makes a BIG difference. The extra weight (about twenty pounds) went on fast and is coming off s-l-o-w-e-r, but I feel great and energetic. I do have chickens, which you are right…they are great at eating ticks! I got them about a year and a half ago, and I love them. They also are great at eating grubs and beetles, on a side note.
I am sorry to hear that you’ve had a lot of issues with your help. Not knowing and also worrying makes a person not feeling well feel even worse. I hope this finds you better or on the right road! Great big farmgirl hugs to you! ~Nicole
Also fighting Lyme and doing better. Glad you found a Lyme literate doctor!
Hi Pamela, A great book from a great doctor (my doctor recommended it) is ‘Why Can’t I Get Better, Solving the Mystery of Lyme and Chronic Disease’, by Richard I. Horowitz, MD. It was helpful. I hope you feel better soon. You are not alone! Farmgirl Hugs, Nicole
So glad to read, you’re well again. 🙂
Thank you Denise! Farmgirl Hugs, Nicole
Nicole, I am so thrilled you are better and that you found a doctor who took his time with diagnosing the problem. May the Lord continue to bless you with great health. Neta
Hi Neta! Oh thank you! It was a year ago this month that I am back to “normal”. I will never, ever take health and being able to be active for granted, that is for sure. I also am thankful for all the wonderful farmgirls who kept me in their prayers. A few farmsisters and close friends figured out I was not myself, and they kept my spirits high. 🙂 Farmgirl hugs, Nicole
So happy that you finally found your answer! My DD has Chronic Lyme Disease. She was misdiagnosed and treated for a different illness for over 3 years. It lies dormant and rears it’s ugly head in the most peculiar ways. A few years ago she was again very ill with a mysterious ailment. I fought and searched and helped her get her insurance company to let her see a Lyme Specialist. Her Lyme Antibodies were off the charts! They put her on an IV drip of antibiotics for 28 days. She was again back to her normal self. The medical community has started to wake up to this epidemic of Lyme Disease. Back when she was misdiagnosed, if the test was negative then you didn’t have it. Problem is the test back then was not very accurate. Testing today is much better. I am glad you are feeling better and I hope your story will help others become their own advocates and get the help they need. There is an older blog post on MJF which tells my DD story in detail. http://maryjanesfarm.org/snitz/topic.asp?TOPIC_ID=46176
Hi Diane, I am so sorry to hear that your family has been touched by an awful tick illness, too. I knew a lady over twenty years ago that was misdiagnosed for the longest time. Her illnesses went so far that she ended up having a stroke…I think she was around thirty at the time. Later on, they found out it was Lyme all along. That was before anyone really ever heard of Lyme. The scary thing about these tick-borne illnesses is how it affects not just one area of the body, and how it can so easily mimic other diseases, including in my case an autoimmune disorder. I am doing great, but I do know from my doctor that I have to watch myself very carefully. I am so much more vigilant with tick protection. (I still use organic, natural oils for tick repellent, and they work very well). I don’t know if you’ve heard of the new tick borne illness that is popping up in the news, but it is a cause for alarm, too. Still, I love the outdoors, and love being outside, I just know that we must be more careful. My best to your sweet DD. She’s not alone! Farmgirl hugs, Nicole
Hey Nicole, thanks for your good thoughts sent to my DD. I just ran across this and thought you would be interested. I hope you have a great tick free summer!http://www.thyroidpharmacist.com/blog/lyme-disease-is-a-hidden-trigger-for-hashimotos
Thanks, Diane. Interesting article, and mentions Dr. Horowitz, the author of the book my doctor referred to. Farmgirl hugs, Nicole
Wow, Nicole! You finally got your answers! I also believe that it is important to be your own advocate. So happy that your health is continuing to improve….
Hi Jan! Thank you. It truly was a long road, and when we went to the last doctor, I had disagreed with my husband at first. I thought he wasn’t the “right” kind of doctor. I am so blessed that my husband was persistent! Farmgirl Hugs, Nicole
As my dad used to say “If you don’t have your (good) health, you don’t have anything!” I’m so glad you were persistent in finally finding out what was wrong! It’s a lesson that will stick with me for a long time to come. And please keep us updated. Your story was truly interesting (and concerning for anyone in tick territory!!)
Hi there, Your dad’s saying is so true, so wise. Thank you so much! Farmgirl Hugs, Nicole
Hi Nicole,
I am so relieved to hear you got to the bottom of why you weren’t feeling yourself! Lyme disease is nothing to fool around with and can often be hard to diagnose as you have learned. Wishing you many happy, healthy days ahead with your beautiful family!
Hugs,
Deb, Beach Farmgirl
Hi Deb! Thank you, farmsis! Lyme disease and other tick-borne illnesses can really make life difficult, that’s for sure. There was such a relief when I FINALLY knew what was going on!
Have a great summer at your beautiful beach!
Farmgirl Hugs,
Nicole
Ditto to what Dori said. You ( and your daughter ) look beautiful! Radiant even. 🙂 What ever you’re doing, it’s working!
Oh gosh, Deb, thank you! You girls, too…it’s the organic food and farmgirl happiness! Hope we can all meet up in person one day soon. 😉 ~Nicole
I know exactly how you feel.. better to learn to listen to your body. Many times its just the aging process. Sometimes sickness or tiredness. The pituitary gland affects everything. If you get a little bump to to forehead it can create all kinds of things including a stroke. My husband just slightly bumped his head and had a stroke two weeks later. Died three months later. Unreal..one day he seemed like he was fine. The next night he was gone. May he rest In the arms of Jesus! He died June 8,2015. Hope you take care of your self.
Susana, Oh my goodness! I am so sorry to hear of your loss! Bless your heart. My thoughts and prayers are with you. Big farmgirl hugs, Nicole
Hi Nicole,
I’ve been thinking about you with all of this and I am sure glad you found the right doctor! I have had three major tick born illnesses and know of the dangers thereof! This is a real scourge that needs much more attention from the medical community! You are such a vivacious individual with “Moxie” and the world needs you at your best!!
I hope you, Audrey, and your husband have the best summer yet!!
Hi Mr. Ramsey! Thank you! Wow! THREE tick borne illnesses…I hope you are well now and continue doing all the amazing, great things that you do. Thanks for being the best teacher ever! Audrey is looking forward to being in your class in eighth grade as well. Have a wonderful summer! ~Nicole
Oh Nicole, I am so relieved you are ok! I have a horse who had had Lyme twice and his symptoms mimicked yours! What a horrible time for you. Blessings to you and your family with your returned good health❤️ Love from Virginia from your transplanted Ridgefield Ct. farmgirl friend!
Hi Meredith! Oh thanks so much! I didn’t realize even horses get Lyme! I hope he recovers fully…keep us posted! Farmgirl Hugs, Nicole
Nicole. I am so happy for you to find the source of your problem. It took me a long time to find out I had fibromyalgia because I also have arthritis and I felt lousy for a long time. But thanks to the right doctor I feel better again. The picture of you and your daughter is so lovely. Take care.
Thanks so much, Bonnie. I have many friends with your same condition, too. I hope that you have lots and lots of “good”, pain free days. Big hugs to you, my farmsister! ~Nicole