Back To the Drawing Board

[mrs_k75]

My Rheum called me and told me that my Lyme disease test was negative. They will be mailing me a copy of my lab results.  Since I had this bulls eye rash about 20 years ago, is it even worth it to try to pursue an LLMD and take more tests? Has too much time gone by? Perhaps I will see a dermatologist too. The test they gave me was the ELISA w/ Western blot. I know this test doesn't sound promising from everything I read.

Thanks for hearing me vent!

[mrs_k75]

Yes, they will be mailing me my results so I should get them on Monday. I will look it over and see if there is anything in the Western blot. I know when they say your test is negative what does that really mean, right? Thanks for all of your input. I will let you know what happens when I get the results.

[JackieCalifornia]

Did you get copies of the lab reports?  You really should have them; just ask the desk person at the dr's office for copies and see if s/he will mail them to you, save you a trip when you're feeling poorly.

That way, your next doctor can see what was done test-wise and move ahead.  All the comments above are spot-on, from what I have learned, and the important thing is not to get tooooo discouraged.  We all hit bottom when stuff doesn't go the way it should, but isn't that why we're here, to gather round the campfire and sing comforting little songs?  Keeps away the boogeymen.

Okay, it's 3 am and I'm a little bit tired after a very long day, so signing off and putting my silly self to bed.  Take care, all my stalwart pals.  (That includes you, mrs_k75.)  

[gorbybelle]

I too have no dx. for lyme but have started abx. since seeing LLMD.

I do know I had a 'tick bite' weeks/months before my symptoms started.

I had neg. lab result.

[wonko]

I never had a tick bite or rash (to my knowledge).  I think the onset of my illness was in Spring '07, but I don't know for sure when I was exposed.  

I also had mostly negative tests and was told by many doctors/specialists that I don't have Lyme.  I had two negative ELISAs, and my Igenex Western blot was CDC negative.

I sought out an LLMD and do feel that I am taken seriously.  I've had a notable response to treatment, and at this point I put more faith in that than any of my test results.  For me, the benefit outweighs the risk.

[patsy10]

Same here.  I had the rash 17years ago.  All my tests are normal.  Antibiotics work very well for me.

The longer lyme is present the less likely it is to have a positive test result.

I might suggest seeing a doctor who specializes in lyme.

[kitty9309]

My story is similar to yours.

I had a bulls eye rash 15 years ago followed by swollen knees and vertigo.

Never saw the doctor aboout the rash. Never treated.

All my tests have been negative, including IgeneX.

I was diagnosed with chronic neuro Lyme in December.

I do however have non-specific tests to support the diagnosis. My CD57 is low-ish (60). My C4a and TGF B1 are very high, indicating that my innate immune system is constantly being stimulated by "some" infection.

Please try to see a LLMD. You will be taken seriously. Gather all of your past and present labwork and document your history.

And... check to see if ANY "bands" are positive on the Western Blot. Certain bands are very specific for Lyme only.