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this may be a silly question but...

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Lyme Disease
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Posted 11/12/2008 4:13 PM (GMT 0)
... is there a way for doctors to tell how long you've had lyme disease? for example, would some kind of blood test be able to indicate how long it's been in your system?

I never have had the EM rash or remember having a bite or even finding a tick on me. I live in an area where there are A LOT of deer (they are always in our yard - and practically everywhere in the neighborhood).

I brought this up one time before I think - I had a slightly similar illness when I was 9 - the doctors never found out what it was (at the time, I was not tested for lyme as it was not that common) and said it seemed like mono. I was achy and tired all the time and was put on a non-dairy, non-yeast, low sugar diet. After about 9 months, it went away.

I now wonder if that was lyme disease and worry that if what I have now is actually a result of chronic lyme than the treatment may have to be different/more aggressive.

How can doctors tell if you have chronic lyme?

So confused...

Posted 11/12/2008 4:25 PM (GMT 0)
There is no way to know for sure. No blood test will tell you. That is one of the hardest parts of lyme is not knowing sometimes. A lot of us go undiagnosed or misdiagnosed because of this. I am one of them. I never had a tick bite or rash. I was feeling ill for about 3 years going from doctor to doctor and finally got diagnosed, but by then I was very far gone into the illness and ended up with chronic lyme. Some of us can go back in our heads and try to estimate a time frame when we could have gotten it. I had viral meningitis when I was 18 (I am now 33) and some think this was when I got my tick bite, but one will never actually know.

The best thing is regardless of when you got it to treat your symptoms now. You will go crazy trying to figure it out. If you do have chronic lyme it will be diagnosed based on your symptoms and not even blood tests.
Posted 11/12/2008 4:38 PM (GMT 0)
I had wondered this too. I was only sick for a month before my diagnosis. However, according to my LLMD, I have chronic lyme.. she said this is indicated by my CD-57 test. She said I've had it for at least 6 months.. hard to swallow considering I didn't have any symptoms.. it must have been dormant, and been activated by stress or something, but anyways, she said since my CD 57 test showed low numbers, i have chronic lyme.
Posted 11/12/2008 5:06 PM (GMT 0)
Wow - thank you both for your responses. That is the thing that really drives people nuts I think - that no matter how much research you do on your own and no matter how many people and doctors you speak with, it seems like there is never a concrete answer and, what's worse, most answers you get seem to conflict!

I will definitely ask my doctor about the CD-57 test, I've never heard of that. My doctor isn't an LLMD per se but he has treated a couple family friends that had lyme disease and they had a great experience with him. I'm currently on week 7 of antibiotics and should be getting more bloodwork done soon.

What a bizzare disease... I hope that more research - better and more widely accepeted forms of treatment start to come forward.

Thank you guys, hang in there!
Posted 11/12/2008 5:25 PM (GMT 0)
I hate to say this, but since my diagnosis in 1998, the treatment is exactly the same. You would think in 10 years something new, better, more effective would have come through. It is amazing how much more research and money and time we seem to need to get a proper treatment. It always frustrated me that they can't come up with a more effective abx that works and get this cured. Being bacterial, you would think they would find something much better than what is out there for options. I wonder what the next 10 years will bring.
Posted 11/12/2008 5:36 PM (GMT 0)
abanana07-- This is off topic, but I was wondering what doctor you were seeing. I remember from a different thread that you were considering the doctor in Germantown. I'm still not with any llmd and was wondering what you ended up doing. I am waiting for blood tests that my neurologist ordered and then going form there. Just curious, I'm so confused about all of this. Thanks for any info. you might want to share.
Posted 11/12/2008 6:07 PM (GMT 0)
Hi Marylandgirl - I was considering the LLMD in Germantown but after speaking to a couple friends who were treated for lyme by their primary care dr - I figured I need a primary care dr anyway and it sounds like this primary care dr is really great, attentive and thorough.

I definitely understand the confusion - it's really hard to know whether or not what you're doing is 'the right thing' or is there even a 'right thing' to do with lyme disease? who knows. If you want the name of the primary care dr. that I'm currently seeing, email me and I'll send you his name and the number for his office. He is in the Gaithersburg/Rockville area. I know I had your email address from before but I can't seem to find it. My email is [email protected]

Good luck with the blood tests from your neurologist!
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