second test results!!!!

Hi everyone......i just recevied my second set of results from lyme test, this time it was neg.....   sometimes just want to scream....i guess i dont really understand this disease as good as i thought.... so if you get + from one result and - from another what does that mean.... my B-12 level is up, and i only have to take that shot once a month now, finished my 30 days of antibotics, but i was only on them for 1 week when they took my last blood work, my Doc told me that i still have it, and that i prob. have had it along time, and it was in one of its flare ups when i was tested the first time, she also said that my immune system is compromised, and by the blood work that she knows i have some iflamatory issues going on...   geeeeee......she did give me fiorocet for the tension headachs and a little better muscle relaxer........i think i want someone to tell me yes you have this or this and this is how your life will prob. be..... hate playing a waiting game......see how you feel now, if you feel worse we will do this.... just tell me will i have to deal with this my whole life, it seems like forever now.... but one day at a time i know......

 

would love to get some feed back....

 

Thanks,

Anita

Why is anyone being tested multiple times? The test only shows if you have antibodies present. As the disease suppresses your immune system, you don't produce the antibodies.

The CDC says lyme disease should be diagnosed clinically, the tests are very little indicator of whether you have the disease or not.

Thanks everyone.... there is one doctor and 2 PA's at the place i go and it seems like everyone has a different, she said i still have Lyme, its just not showing up, on the blood work this time....that the one round of antibotics must have worked, i dont know.... drives me crazy..... there is no LLMD doctor that is close here, and even if there was i am not sure i could afford to go...

Chicksinger this is a very confusing disease, the people on the forum help me understand it a little better, i think the thing that we all are lacking is good supporting doctors that will accept insurance, the problem where i live, and from what i understand the medical board run one of the best doctors for lyme out of the state, and now all the doctors around here are afraid to even say......YES you have Lyme Disease..... I have read stories to where people are being truned away, just for saying they have Lyme Disease.......in NC i think we have the state mandating what our doctors will treat......which is sad, the state and insurance are making choices for us, not our doctors....

traveler: I dont think she thinks i am cured, just that the antibotics seem to be working, but from what i have heard, sometimes when you do 30 days on then dont do anymore your symptons can come back and possibly even worse....i have to go back in a month and see where i stand at that time, she said if i start feeling bad agin before the month is up then to come back.....lol i feel like a yo yo..... knowing that i will prob. be feeling bad again soon, or afraid that i know that from now on i wont know from one day to the next that i could end up not able to work, and just all the mystery that comes along with this diesase.... it sure does keep your mind and emotions working.....if you feel bad one day you wonder if you have a BUG (bad choice of words i know) or if it is disease kicking in again.........

Justme,
Thank you for clearing that up, boy I sure misunderstood what you were saying!!

I do believe that once a person experiences this disease, goes through whatever length & type of treatment that it takes for them to either be in remission or to actually be cured - we will at that point in time be so familiar

with what it feels like to have a tick-borne infection, that when we do get another one, we will know much sooner than most blood tests will work!

All we need is to have a good doc on hand that trusts our judgment about it! At least that's the way it was for me the last year & a half!

Just my 2 cents...

Dear Anita,

Here is the same explanation I just posted for someone else who had a positive test then a negative one a few weeks or months later:

As you probably know, the ELISA and Western Blot tests do not test for the bacteria itself. They only test for the presence of antibodies to the bacteria.

There are many reasons why these tests are inadequate/just plain BAD tests! One of the biggest problems is that they assume that everyone's body will produce the SAME antibodies at ALL times no matter what. This is absolutely not true!

The blood tests won't always find the "right" antibodies or enough of the "right" antibodies, because everyone's body is different and reacts differently to illness and the responses also change over time.

Here are three reasons I can think of off the top of my head why a Lyme test could be positive one time and negative the next:

1. Even if your body IS producing the "right" Lyme antibodies, they may all be busy doing their jobs, which means they are "attached" to the antigens, i.e., the various surface proteins of the Lyme bacteria. When the antibodies cling to and attack the different parts of the Lyme spirochetes they form "complexes". The blood tests can only detect the antibodies that are free-floating in your blood, they won't see the ones in complexes. So the free-floating antibodies detected the first time by your positive test may all be in complexes now, which explains the negative test.

2. Your immune system may be too weakened to make the antibodies right now. Even if it was making them a few weeks or months ago, it may not be able to make them now because Lyme suppresses the immune system.

3. If you have Bartonella in addition to Lyme, Bart is actually able to go in and "turn off" the immune system's ability to make antibodies to itself AND to Lyme! That's why so many people who actually have Bart test negative for it. It's possible that in the interval between your two tests the Bartonella actually altered your immune system and caused the second test to be negative.

Good luck with everything....try not to stress too much over this! A good LLMD understands why tests can change from positive to negative. Please see an LLMD ASAP if you are not already seeing one!

Take care,
JoAnn

ex_hacker, sorry to have sounded snippy. You're right, of course, to verify sources and make sure that there is a scientific study behind everything. I didn't realize that ONLY Schaller had said that about Bart. Thanks for your clarification on that.

As to which telescopes I use, yes, I've used many of the great ground-based telescopes including some of those on Mauna Kea and Palomar. But I guess you don't realize that (a) there were 4 NASA Great Observatories: Compton, Hubble, Chandra, and Spitzer, (b) three of them are currently flying and collecting data: Hubble, Chandra, and Spitzer. I work for Spitzer.

www.nasa.gov/audience/forstudents/postsecondary/features/F_NASA_Great_Observatories_PS.html

@ex_hacker, I think you perhaps you should create a separate, informative post on the Western Blot blood versus synovial fluid issue. Although I was tested with a Western Blot on blood (IGeneX positive) and spinal fluid (negative). But draining a swollen knee is very different from a spinal tap.