Can lyme cause symptoms decades after being bitten?

I've been to numerous rheumatologists trying to find an answer as to why I'm having the symptoms that I am, and none of them came up with the same diagnosis. I've heard everything from fibromyalgia to sjogren's syndrome with various prescriptions, massage, PT and nothing helps long term.

My father believes that my symptoms could be due to lyme disease, but when I brought it up to a doctor once he said no way, because it's been so long since I lived up there (I grew up in Indiana and moved to another state over 20 years ago).

Here are some questions:
A) can symptoms be present so long after being bitten? I remember when I did live in Indiana, we would go on hikes and be outdoors all of the time and I often found ticks attached to me. I never noticed a rash because I was younger and didn't know about rashes back then, and the ticks often attached in weird areas that were not visually accessible like on my scalp buried in my hair, or right behind my ear.

B) my most aggravating symptom is chronic pain that will lessen from time to time, but at some level it's felt to some degree every day, 24 hours a day for the past 6 years. It's maddening and nothing help alleviate it. Can lyme cause ongoing pain like this?

C) If it 'could' be lyme, what type of doctor do you start with...infectious disease, family doctor, other?

Thank you very much for reading. I just don't know if pursuing lyme as an option would be a waste of my time, but since I've spent so much time and money dealing with rheumatologists, I figure that I should see if there is anything else that I can do.

or maybe if it's not lyme, it could also be one of the coinfections like bartonella or babesia or a mix of these? I think you should try and find a LLMD to work with and help guide you with testing and possible treatments. Given your history with tick bites I think thoroughly investigating lyme and coinfections is the way to go. I'm also very curious as to lyme's possible ability to stay dormant over years.

Funny that you ask your question, because I lived in Indiana as well in my youth, and I'm pretty sure I contracted something there when I was 10-11 years old. I've been wondering about that a lot lately actually if my health issues don't stem from tick bite when I lived there.

I think this thing I contracted stayed relatively asympotmatic in my system, with mild to moderate discomfort in lymph nodes behind ears and some fatigue that would wax and wane, but innocuous enough that I never felt the need to see a dr.

But this underlying thing blew up once I got mono at 23, that's my theory. The only thing I've been dx'd with is this thing protomyxzoa rheumatica, and I have been tested for bart, babs, lyme with negative results but not sure that means they can be fully ruled out. My guess is some of these illnesses can stay dormant for years until the right trigger or factors occur that help springboard them into action. I'm not sure if there is much science or research on the potential for these illnesses to stay dormant for years but would love to know if anyone has any solid info.

Good luck! I hope you can find a solid llmd to work with and hopefully figure out what might be going in so you can get treatments that really help.

Post Edited (sebreg) : 6/27/2015 3:19:30 PM (GMT-6)

You symptoms along with the history of tick bites is indicative of lyme disease. It sounds like the Doctors haven't been able to diagnose you...so I think you should see a LLMD.

Lyme disease usually comes with a co-infection or two (or three, four, etc) - like bartonella, babesia, etc.

A LLMD will also be able to sort out what co-infections you may have.

Take a deep breath, and let it sink in.