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The Great Medical Mystery: A Tale of Seven Doctors
You know that feeling when you walk into a room, and you can’t remember why you walked in? Now imagine that feeling, but instead of a room, it’s a doctor’s office, and instead of forgetting why you walked in, you have no idea why your body has decided to wage war against you. Welcome to my world, the Twilight Zone of health.
Over a span of four years, my body had transformed into a symphony of discomfort. Daily headaches, fatigue, nausea, joint pain, lower back pain, memory issues such as word loss and short term memory loss – I mean, really, could there be a more bizarre combination?
At first, I thought I was just being dramatic. I mean, who hasn’t had a headache and forgotten a word or two? But when my body started humming the tune of discomfort in every key possible, I knew it was time to seek professional help.
So, off I went to see Doctor Number One. The result? A shrug and a suggestion to hydrate more. Doctor Number Two recommended yoga. By the time I got to Doctor Number Three, I was ready to audition for a medical drama with the number of tests I had under my belt. Lupus? Negative. Rheumatoid arthritis? No dice. MS? Nope. Thyroid issues? MAYBE.
I then embarked on a grand tour of medical offices, meeting Doctor Numbers Four, Five, Six, and Seven. Each one was equally stumped, equally unable to solve the mystery of the Discombobulated Patient.
There I was, living my very own episode of ‘House M.D.’, minus the genius doctor and with a much less dramatic soundtrack. Instead of a heart-wrenching drama, my life had morphed into a sitcom where the punchline was always, “Well, we still don’t know what’s wrong.”
As strange and hilarious as this journey may seem, it does come with a silver lining. Amidst all the confusion, I’ve learned how to be my own health advocate, how to persist in seeking answers, and how to laugh in the face of uncertainty.
So, to all the medical mystery solvers out there, I say this: keep your humor, keep your hope, and keep pushing for answers. And remember, even if you feel like the star of a sitcom gone wrong, at least you’re the star.
Through all the trials and tests, the frustrations and the funny moments, I’ve learned that sometimes, laughter really is the best medicine. And while I’m still searching for some of my own medical answers, I’m also still laughing. Because at the end of the day, sometimes all you can do is laugh, keep going, and remember to hydrate.
🙂: In 2013, I waited several months to get into a CFS/Fibromyalgia doctor I had found myself online. She immediately asked if I’d ever been tested for Lyme disease during my new patient appointment. My answer was No.
I tested CDC positive for Lyme disease, Chronic Epstein Barr, and Hashimoto’s disease. Things finally began to change.
Thanks for Spreading the LOVE!!!
44 Comments on “The Great Medical Mystery: A Tale of Seven Doctors”
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Read Between The Lyme 
Your persistence, knowledge, and personal advocacy set you apart from most patients. Those with fewer of those qualities can be defeated by our medical system. I am glad you weren’t.
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Thanks, Dr. Stein! I’m still working on my healing journey, but finding the right people to help me has been pivotal. I hope you’re having a good weekend!
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For my right hip, I have been send to the Physical Therapist, the whole health doctor and now am going to the sleep doctor. Lots of x-rays, YouTube Videos about various forms of arthritis and alternatives to hip replacement. I am learning that your own discipline, quest for knowledge, and information will keep you going more so than other systems in place.
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I agree. When I was first diagnosed 10 years ago, I did a lot of reading, on FB forums, autobiographies of people with Lyme, Internet searches, etc. It was difficult because for some bizarre reason that I still can’t figure out, Lyme disease is somehow still not completely understood, and it is the epicenter of controversy (well, chronic or persistent Lyme is). I knew none of this in 2013. I knew about Lyme as I’m sure you did from growing up in upstate NY. I had NO idea it was also endemic to the Gulf Coast. Stay strong on your quest to heal, my friend ❤️
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Cheers to you for maintaining a sense of humor…persevering and pushing through to get the diagnosis. Finally. The first couple of doctors — ‘hydrate more, do yoga’. Sigh. I’m glad you can look back and smile…but I agree, you must’ve felt like you were prepping for a job on a tv medical melodrama! Sending hugs! 🥰
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Hi Vicki! Happy Sunday 🙂 It’s definitely been trial and error pursuing a diagnosis and treatment. I try not to think about the “if only” stuff because that’s a waste of time. As always, thanks for the hugs. I can’t wait for your book 😍
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You are such a love — thank you! I just wish you could’ve skipped through the trial-and-error phases a little more quickly…but you’re right. What a time waster, the looking backward. Hope your Sunday is restful and wonderful in every way! 💕
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Such a challenging journey. The medical system is pretty tough to navigate these days, with computers running the show instead of doctors. They actually want me to make several appointments for different issues, because they have to code the paperwork correctly for the computer. We’ve lost lots of ground to those computers in health care, IMO.
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You’re so right. It’s really difficult to figure everything out. I’m trying to schedule an x-ray and a colonoscopy and for some reason both are taking way too long and too many phone calls! It’s ridiculous. I think you’re right about the computers, but I also think insurance companies have been given waaaay too much power as well.
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I agree about the insurance companies. They and the computers are in it together.
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Being your own healthcare advocate is the best and most important thing you can do. It sounds like it was such a frustrating journey for you to get the answers. It is never like it is on TV. That’s for sure. In the real world, doctors know so little.
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I know others have had similar experiences. And while I realize that the myriad of symptoms I was having never added up to “enough” or maybe textbook, no one looks for Lyme disease here on the Gulf Coast, and they probably should. You’re right though. It’s never like on TV 🙂
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I had my own first encounter with the medical establishment recently: the first in years. Believe me, it gave me a new appreciation for what you’ve written here. Sometimes, educated, persistent patients may irritate the establishment, but it’s our health, and our right to be given answers — to the best of a doctor’s ability, of course.
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I hope you’re getting the help you need. While most of the doctors I went to were definitely trying to do their best, each had their specialty and that was that. Of course, I wish I knew better as well. Lyme never even crossed my mind. As recent as 2 years ago, I was basically told by an allergist that “Lyme does not exist in Texas.” This was after I was honest with my medical history. The implication being I couldn’t have it because….well, ya know. Wishing you the best as you try to get answers!
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This is all too relatable for me. My story also felt like a wild goose chase, complicated by the fact that my symptoms onset began with a fungal/bacterial lung infection, which doctors (for years) were convinced has disseminated to other symptomatic organs, but (oddly) hadn’t yet killed me. While for me it was household toxic mold, it’s my understanding that the both the symptoms and the general medical ignorance is similar to Lyme. Being your advocate is the often the only path to diagnosis and recovery, unfortunately, but it’s a long, lonely, and discouraging path… my heart breaks for those who have given up before finding their answer.
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I know you know this all too well, Erin! And while I realize how difficult some cases can be for doctors, to go years without making any progress is something that as patients, we shouldn’t have to do. You are correct that there is medical ignorance or perhaps lack of training when it comes to mold toxicity as well as Lyme. While most doctors I saw were sincere, not one went beyond their specialty to try to help me get answers. This includes my GP at the time also, unfortunately. But I got very lucky. Many people do not and as you acknowledge, they suffer indefinitely. I hate this more than anything sometimes. We’ve both been there, our voices not heard and falling on deaf ears.
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Wow, I’m sorry you’ve had to deal with this because of a stupid bug. The doctors have no clue, do they…
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Hi John, I know that every doctor I saw and have seen since (except for 1 or 2) is trying to do their best for patients. But unfortunately, I guess due to training, none looked beyond their own specialized area. It’s just how Western medicine is I guess.
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I say that that is not good enough. Just being honest. ❤️
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I agree wholeheartedly with you on this!
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It’s so important to be your own health advocate!!! Thank god through your persistence you finally found the right doctor and diagnosis. I research as much as I can regarding any health issues for me and my family and any doctor who doesn’t appreciate my questions or input during their very brief time with me will lose me as a patient. Take care and keep laughing as much as you can!🙂
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Hi Curious, thank you! It got a little dicey towards the end right before I found the doctor who diagnosed me correctly. My final stop was an infectious disease doctor. This was 4 years into trying to figure things out. He basically told me that I had nothing wrong with me. He never even took blood even though he had all my medical files, etc. at his office. You are definitely smart to research and to stay very involved in your own care!
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It sounds to me like you are allergic to doctors!
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Sort of! 🤪🙂
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I have had a couple of those be-your-own-advocate moments too. There are plenty of great medical professionals, but others look for simple answers that aren’t the root of the problem. So glad you got to the bottom of your health situation.
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Hi Pete! I hope you’re doing well!
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Wow – that is a saga. I love your advice to be your own advocate – and to keep laughing. Thank goodness you finally got a diagnosis so you could at least name what you were experiencing. How frustrating!
Wonderful, inspiring post, Belle!
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Hi Wynne! Thanks for reading. I’m still trying to find my way, but it did and has helped to have the initial diagnosis. I hope you all are having a good weekend! ❤️
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Well done for persisting 💜💜
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I’ve learned a lot about Lyme disease through the journey that you are sharing. But more than that, I’m learning about importance of self advocacy, research, persistence and having a healthy perspective, which includes laughter. 🙏
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You are right about becoming your own advocate. You must have been surprised to have three separate diagnoses. I did not know that Lyme disease was in the south Texas area. Wishing you good health.
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Hi Kerry! Well, my doctor’s think that because I had untreated Lyme disease for so long that it’s messed up my immune system and other systems are wonky, too. So the diagnosis of Fibromyalgia and CFS have come later as I went through treatments for Lyme and yet certain symptoms have just hung on. Unfortunately, there’s no test to see if the Lyme is completely gone or not. Yes, please be careful! Texas A & M did a longitudinal study (over a decade) about ticks and disease along the Gulf Coast and concluded that Lyme disease is endemic to the Gulf Coast regions. I think it was published in 2014. I’m wishing you good health as well, my friend!
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Sending you a belated hug – a few days have gone missing with doctor’s appointments. I know you will understand…
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No worries! I get it! I hope your appointments went well. We just finished school for the summer, and I have back to back appointments for the next week or so. I’m trying to squeeze them all in so maybe I won’t have any in July 😂
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Good plan!
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“If you feel like the star of a sitcom gone wrong, at least you’re the star.” Your hang-in-there attitude is refreshing–and wise! (Afraid I don’t know your name.)
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Hi Mitch, thanks for reading my semi-rant 🙂 my name is Belle. Hope your week’s off to a great start!
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Likewise, Belle.
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Sorry, doctors….not doctor’s 🤪
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I’m sorry to hear about what you’ve been through but your attitude is super inspiring. Thank you Belle! I wish you all the best. 🙏
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Thank you. I appreciate your kind words!
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Wow. You’ve been on this quest for a while now. Thank goodness you’ve found a diagnosis. Now to get you on the healing path to a healthier you. 💜
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It sure is challenging to go to Doctors! Glad you kept at it.
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Thank you for sharing your story!.. it serves as a role model and inspiration for many who have to deal with ongoing health issues!.. some of the symptoms you describe can be related to the aging process (which I do experience personally and having to deal with my late wife’s cancer for 4 years), and even though the doctors may confirm the health issue and help to some degree, as you said, it is up to the individual to adjust the sails a bit and become their own health advocate to some degree… 🙂
Hope all is well in your part of the universe, your path is paved with love and happiness and until we meet again….
May love and laughter light your days,
and warm your heart and home.
May good and faithful friends be yours,
wherever you may roam.
May peace and plenty bless your world
with joy that long endures.
May all life’s passing seasons
bring the best to you and yours!
(Irish Saying)
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