Diagnosis? How do I know?

I have been doing so much research on this disease after being told that I have it. My western blot IgM results were active for 23 and 41, but nothing else. IgG results were all non-reactive. According to diagnostic criteria these meet criteria for diagnosing, but in the acute phase. I do not have any acute symptoms; no flu like symptoms, no rash, no bite, heck I haven't even seen a tick. I do have chronic symptoms; head aches, muscle discomfort, cognitive functioning, and even numbness and tingling in my arms and toes. I was reading that 41 kd is also implemented in HIV western blot testing. So one of my biggest questions is, is this the same western blot test, or different strips but same kind of test. I am freaking out thinking that I may have HIV because 41 kd is reactive and I do not have any symptoms of Lyme.

[JackieCalifornia]

Welcome to our corner of MedHelp --

Sorry to hear you are not feeling well.  Good for you for doing research!  Lyme is one of those things that requires much from its patients, not only putting up with the disease, but having to figure out so much for ourselves.

What tests were done?  Western blot only, or also with ELISA?  

The Western blot and ELISA tests look for antibodies in your blood that your immune system has made to kill the Lyme bacteria, but one of those tests has a high false positive rate (meaning it says you have Lyme but you might not actually have it) and the other has a high false negative rate (meaning it says you don't have Lyme but you might actually have it). Therefore the tests are not very accurate, and the diagnosis should not rest wholly on the test results.

You indicate positive IgM reaction for bands 23 and 41, and no IgG reaction on any bands.

Do you have copies of the actual test results?  They usually show little + marks on the positive bands, and the more + marks, the stronger the indicator.  Some labs don't report the number of + marks, and to complicate matters, some docs require more + marks to be a positive result than other docs do.  That's why having a copy of the actual, detailed results could be useful to you.  (I have learned the hard way to get copies of ALL my test results right away and to keep that copy at home.  They can come in handy later.)

Band 23 is specific to Lyme disease, meaning that no other disease would cause Band 23 to light up as positive.  That is diagnostic for Lyme, tho some docs want more than one band to be positive.

Band 41 means the test found spiral-shaped bacteria, but it could be any one of several, including Lyme.

IgG and IgM parts of the test show how old the infection is:  a positive Band 23 in IgM means a more recent infection; any positive IgG markers would indicate an older infection, but these boundaries are far from precise.  They are meant to be just general indicators.

Don't freak about about having HIV.  Western blot tests are used for different diseases.  Your doc would tell you if you were positive for HIV.  If you want to be absolutely sure, call the office and ask "Does this mean I could have HIV?"

Now about your symptoms.  You say you don't have any acute symptoms of Lyme, just chronic symptoms, which one would think would show up as positive IgG.  Again, there is no magical cut off as to when acute stops and chronic begins.

Also:  don't get fooled by the 'did you see a tick or a rash' question.  LOTS of us never saw a tick OR got a rash, but we sure as heck got Lyme.  

The tests are so inadequate that they are not supposed to be relied on as the last word in diagnosis.  Instead, the symptoms and the tests are supposed to be viewed together and a reasoned judgment made.  Unfortunately some docs are in love with test results and aren't real interested in physical symptoms.

It sounds tho like your doc has told you that you DO have Lyme, which is very broadminded of him.

Were you also tested for any co-infections, which are other diseases the Lyme ticks also may carry in many instances?  That can also account for some of your symptoms.

For example, I got Lyme and babesiosis (which is like malaria) but I never saw a tick or had a rash.  I had terrible symptoms like you describe.  I was a mess.

Somebody else in my family was (at the same time I got sick) diagnosed with Lyme and babesiosis too, but had only mild tiredness as symptoms and never had a rash or tick either.  Everybody is different that way.

What does your doc want to do in the way of treatment?