15 years ago, I was in tall grass and got a bug bite which was the classic bull's eye bite. At the time, I was in my early 20's and just thought it was an interesting and large bug bite since not much was publicized about Lyme's Disease back then. Now, in searching for a reason for some symptoms I have, I've found that Lyme's Disease keeps popping up. Could I have had Lyme's Disease for all of these years and not have known it? Over the past 15 years, I've been on antibiotics numerous times for different things. For years I've had many symptoms which have been dismissed by doctors, so it's not like I've been exactly healthy or anything. So...if I go to my doctor and ask to be tested for Lyme's Disease when my bull's eye bite was 15 years ago, is that stupid?
Welcome -- and no, it's definitely not stupid to pursue this.
There is a lot of confusion in the medical community about Lyme, and it's a field that is changing quickly as to how widespread Lyme is, how to best test for it, and how to treat it effectively.
People with strong immune systems (and it sounds like yours is) can often carry on for years not feeling awful, but knowing that something is wrong ... and it sounds like you've experienced that. Lyme is caused by a spiral-shaped bacterium that is persistent unless treated -- it's not like a virus that goes away after your immune system beats it to death. (Except right after infection, Lyme needs longer antibiotic treatment that the few weeks that most infection require, so even though you've been treated for other things, the treatments were likely not for infections like Lyme -- which often takes months of treatment with specific antibiotics not often used for other ailments.)
Because Lyme symptoms -- as yours are -- can be low-level and annoying, but not so bad as to put you in the hospital, many docs don't know what they are dealing with or how to diagnose it -- or if they do diagnose it, they don't understand that a quick two weeks of antibiotics won't do the trick except very early after infection.
Maybe half of us who get Lyme never saw a tick and (unlike you) never got a rash -- so we have no history to tell the doc except "I don't feel right."
The trick is finding a doc who understands the sneaky nature of Lyme and how to test for it and to treat it. (The Lyme ticks often come with other infections as well that a good doc knows to look for based on your symptoms and possible doing some tests.)
There is a split in the medical community about Lyme and how to diagnose and treat it -- and even whether it's serious or not. Lyme does its dirty work quietly, and can cause damage over time to your joints and other areas. The most logical docs to see are infectious disease (ID) MDs and sometimes rheumatologists (because Lyme can damage the joints) -- but unfortunately these two areas of specialty are especially dismissive of those with Lyme symptoms.
So the first trick is to find a doc who understands Lyme and its peculiarities. Two things to try:
1 -- email to
contact [at] ILADS [dot] org
and tell them where you are located and how far you can travel to see a Lyme specialist. ILADS (Intl Lyme and Associated Disease Society) is the main voluntary group for MDs who really understand Lyme. They will likely send one or more names you can check out on line and see what you think.
NOTE: We do NOT post Lyme docs' names here in the open, because in some states, the medical boards will try to shut down docs who don't follow the 'two weeks of antibiotics and you're done' approach. Sounds odd, but it's just the way it is at the moment in the Lyme world.
2 -- Search online for something like
or LLMD philadelphia
or whatever area you can get to. (My Penn. geography isn't strong.)
3 -- You could also search for something like
pennsylvania lyme disease
and you might turn up some patient-oriented groups who can give you leads to find an LLMD near you. You could also narrow that by searching something like 'western pennsylvania lyme disease', or whatever makes sense.
Many MDs do not understand Lyme, and those who do and know how to treat it effectively are often not respected by other docs, so don't be surprised to find some crankiness out there.
Having had Lyme myself, I can definitely say it's worth getting treated!
Best wishes to you, and let us know how we can help --
I was bit over 20 years ago. I never had the rash but for many years I was sick. My doctors couldn't figure out why I had a low grade fever for over 10 years. They labeled me with many things and I was able to work.
About 18 months ago, I got terribly ill. I had to go on disability. I lived in Tx at the time and they didn't believe in Lyme. I knew from a nurse friend of mine in Va, who has Lyme that I had it also.
It wasn't until I moved to Fl and went to an LLMD that I started treatment. I was unable to walk and had muscle weakness in TX but am steadily improving now.
As Jackie said, its worth finding an LLMD and start treating it .
Yes. Odds are quite high that you still have Lyme Disease. Lyme is the only known disease to create a bulls eye rash. It is definitive for Lyme and doctors are supposed to treat it immediately, no testing necessary. The usual abx prescriptions for sinus infections, et.al. won't cure Lyme. Unless you had high dose Doxycycline, Amoxicillin, or other Lyme killing drug for several weeks early in the disease, then you still have it.
It is rare for a person's immune system to clear the bacteria by itself. As you've had otherwise unexplained symptoms over the years, it does sound like you've got a robust immune system that has held the Lyme to a mild case all these years. You could also have a less virulent strain of the bacteria.
I would guess you don't have any coinfections. My doc has said that he finds it easier to treat someone with a 20 year case of just Lyme than someone with Lyme plus a couple coinfections for 5 years.
It is not at all stupid to go to your doctor and ask for Lyme testing after all these years. After all, you have a history of a tick bite, bulls eye rash, and symptoms. But the medical establishment is weird about Lyme. Misinformation runs rampant, and you never know how a doctor will react. Some docs become hostile and refuse to test you. Others are supportive and open.
Just because a doc has been kind and supportive over the years doesn't mean they'll be kind or supportive about Lyme. My doc has irritated me multiple times over the years. She's a stickler for rules and very conservative about following guidelines and recommendations. However, she surprised me with her support during my illness. That was in contrast to my hospitalist who was downright rude to me in insisting I didn't have Lyme and Babesia. "Too unlikely!" he snapped, as he released me with a bottle of Vicodin and no diagnosis.
If your doc does order Lyme tests, please ask that s/he order the Western Blot. It is better than the Elisa screening test. Labs generally don't run the WB unless the Elisa is positive. Keep in mind that you can test false negative on either test. I was completely false negative according to the CDC testing protocol. I got tested at IgeneX, a specialty lab, and they found two Lyme specific antibodies that the CDC ignores. They said I was positive. It was this result that convinced my PCP.
Even if you do test positive, there is a good chance the standard treatment for you will fail since you've had it a long time. Only a LLMD will treat you properly, which is until you are well.
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