Same story as a lot of people here. I got Lyme when I was in my early twenties. I had no bullseye rash and no evidence of a tick bite. And I lived in California which made it even more confusing.
Woke up one day with debilitating headaches (I never got headaches normally). Lasted for two weeks, doctor said I had "viral meningitis" which should clear up on its own. Coincidentally they did, and thought all is well!
Next week my elbow hurts. Then my pinky. Then my foot. Then my neck. Every day it would be a new obscure part of my body, until a month in I was in so much pain I could barely walk. For someone in their early 20s, this was debilitating.
The doctor comedy of errors continued. They said I had juvenile arthritis, which is a common misdiagnosis and an insane one considering how acutely this came on. She prescribed me steroids but I declined because I didn't trust her diagnosis (fun fact I learned later: steroids make Lyme worse and harder to treat). I got referred to a rheumatologist who likely would have continued down the same short-sighted path, but thanks to a modern medical miracle -- no appointments available for 6 months (!), that didn't happen either.
I was losing patience and time, so I started researching everything I could. I forced the doctor to run blood tests for everything possible, including Lyme, Rocky Mountain spotted fever, everything. She almost refused to give me the tests because "that's impossible! you've never had the bullseye and there are no ticks in California!" She even accidentally left the Lyme test off my lab sheet (??) which I only caught when I double checked the paperwork with a lab tech.
I was starting to lose hope thinking being nearly paralyzed would be the rest of my life.
And then the western blot came back positive.
48 hours on doxycycline and EVERYTHING disappeared. Over 3 months of debilitating pain, and all I needed was a pill of the most common antibiotic out there. Just wow.
I had to follow up with the CDC and an infectious disease specialist. So how did I get bit by a tick all the way in California? Turns out, I went camping near Boston a week before this all happened. I told the whole story to the infectious disease doctor (who grew up in the northern Midwest). His response?
"Classic Lyme"
Get tested for Lyme y'all. It's one of the most misdiagnosed infections out there. And if you have all the symptoms but test is negative and have been in nature, just take doxycycline. Not worth risking your life.
Thank you for sharing your experience. I wonder if there's a course for non-medical professionals about common symptoms and what to look out for. My high school didn't offer one.
Yep that was one of my justifications for wanting to get a Lyme test. Their response: "well you never had a rash and don't remember being bitten by a tick so that sounds impossible"
Woke up one day with debilitating headaches (I never got headaches normally). Lasted for two weeks, doctor said I had "viral meningitis" which should clear up on its own. Coincidentally they did, and thought all is well!
Next week my elbow hurts. Then my pinky. Then my foot. Then my neck. Every day it would be a new obscure part of my body, until a month in I was in so much pain I could barely walk. For someone in their early 20s, this was debilitating.
The doctor comedy of errors continued. They said I had juvenile arthritis, which is a common misdiagnosis and an insane one considering how acutely this came on. She prescribed me steroids but I declined because I didn't trust her diagnosis (fun fact I learned later: steroids make Lyme worse and harder to treat). I got referred to a rheumatologist who likely would have continued down the same short-sighted path, but thanks to a modern medical miracle -- no appointments available for 6 months (!), that didn't happen either.
I was losing patience and time, so I started researching everything I could. I forced the doctor to run blood tests for everything possible, including Lyme, Rocky Mountain spotted fever, everything. She almost refused to give me the tests because "that's impossible! you've never had the bullseye and there are no ticks in California!" She even accidentally left the Lyme test off my lab sheet (??) which I only caught when I double checked the paperwork with a lab tech.
I was starting to lose hope thinking being nearly paralyzed would be the rest of my life.
And then the western blot came back positive.
48 hours on doxycycline and EVERYTHING disappeared. Over 3 months of debilitating pain, and all I needed was a pill of the most common antibiotic out there. Just wow.
I had to follow up with the CDC and an infectious disease specialist. So how did I get bit by a tick all the way in California? Turns out, I went camping near Boston a week before this all happened. I told the whole story to the infectious disease doctor (who grew up in the northern Midwest). His response?
"Classic Lyme"
Get tested for Lyme y'all. It's one of the most misdiagnosed infections out there. And if you have all the symptoms but test is negative and have been in nature, just take doxycycline. Not worth risking your life.