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Could this be Lyme Disease
by JoeSmith12, Nov 09, 2009 02:12PM
I have been experiencing very unusual thing the last few months. I started by having bad headaches which lead to head pressure, in my temples, scull, eyes, ears, face...which is always present at time worse then others. This then led to dissiness and vision issues and irregular heart beating. Now I'm experiencing joint pain in my knees. My symptoms stated about two months ago. I found a tick on my left leg about six months ago. I removed it and never got the traditional bullet rash, so never saw a dr...now I'm wondering if this could all be Lyme Disease. My main dr has done every blood test you could think of, except Lyme. I've been to see an ENT, a cartiologist, and in December will be seen by a neurologist. In the meantime should i go back to my main dr and ask for a lyme test to be done as well or should i wait and mention it to the neurologist or do you think that the likelihood of Lymen disease to be very unlikely? I was a rather large tick, thinking it was a wood tick, not a deer tick and like I said no rash after...your thoughts please...
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Frankly I don't understand the insistence of the MDs that only the little deer ticks can give you Lyme ... yes, the deer are the reservoir for Lyme, but if a deer tick falls off an infected deer and bites a dog, then the dog gets Lyme (and they do! vets are very up-to-date on this topic), then dog tick bites the sick dog and then bites you, why can't you get Lyme??
If I were in your shoes, I would NOT wait to see the neurologist. Quick treatment is important, and altho 6 months have passed, the sooner the better is the rule of thumb for treatment. Also, neurologists as a group are NOT known for 'believing' in Lyme, so if I were you, I'd go back and insist on a Lyme test and also tests for common co-infections that often are carried by the same ticks. You can also then see the neurologist at the scheduled appointment, because it's possible you might have something other than Lyme.
Your main doctor you are thinking of going back to for the test may have a more open mind, but the fact that he tested you for everything BUT Lyme is not encouraging. You don't say where you live, but if you could get yourself to an MD who has a more aggressive and broadminded view of Lyme, I would do so. Lyme doctors (patients sometimes call them "Lyme Literate MDs" or LLMDs) don't advertise, because they sometimes get flak from the local medical boards who don't believe in Lyme. It's a sad fact that Lyme patients end up doing a delicate dance among their various MDs, who engage in turf battles. The only casualties are the patients.
If you need help finding an LLMD, let us know and we can direct you to some websites/goodle searches.
Hang in there.
I would insist on a lyme test from the doctor. Keep in mind though that lyme testing is not very accurate. So you can have it and test negative.
I agree with the above posts - it sounds highly likely you have an infection from that 'tick' - lyme tests can be very inaccurate that is why it is a good idea to see an 'LLMD.' - these docs. understand the whole picture of lyme - much more so than 'main stream' docs.
Many people here - myself included - have been treated for lyme without ever having a positive test - diagnosed on symptoms and poss. history of tick-bite - though ticks and the rash are not always seen.
Joe do you know what test your doctor ran? Keep us posted on your results.
It sounds like you got an ELISA test, which is the 1st of the 2-stage testing. Standard guidelines will deny you the 2nd stage based on your negative screen.
But keep in mind...that the tests are not that reliable. Lyme is much more treatable early on then it is after a delay. If it goes untreated, it can cause chronic problems and permanent damage.
You live in an endemic area (after all, this disease is named after Old Lyme, CT!), you have known tick exposure during tick season, and your symptoms fit. I am not a medical doctor nor can I tell you what to do, but if it was me in your shoes, knowing what I know of the pain and complications of a late dx, I'd insist on a course of antibiotics ASAP. The risk of a few weeks of oral antibiotics, in my opinion, is far outweighed by the benefits of early treatment for your potential Lyme.