My LLMD is gone till next Wed and they don't have the print out yet so it's not final. The assistant called to tell me and said not to be discouraged because many chronic lymers test negative.
Just so depressed. So wanted a solid answer that I'm going in the right direction.
Are any of you treating regardless of negative results?
Feel like crying.
Posted by Geneal (Member # 10375) on :
Aw honey.
It is just an antibody test. If your body isn't
Producing antibodies, then the test will be negative.
Wait for the print out.
Did you do an antibiotic challenge for 30 days prior to the test?
Sometimes this "primes" the immune system into posting a response.
Gives you the highest chance of positive bands.
Hang in there.
Hugs,
Geneal
Posted by Leelee (Member # 19112) on :
I am so sorry. I know it is difficult and frightening all at the same time.
Your LLMD's assistant is correct, though. Not all of get the results we expect (or want, if that makes any sense) the first, second, or even third time we test for Lyme.
If your LLMD is a good one, he or she will look for other causes for your illness or treat you for Lyme and possibly co-infections anyway based on a clinical diagnosis.
Please come back to Lymenet when you feel the need to talk. We have all been through so much and can relate and understand.
All the best.
Posted by Melodymaker (Member # 16434) on :
My niece initially tested negative for Lyme, then positive later on. Not unusual.
I have never tested positive for Lyme, but the disease process is very clear.
In fact my specialist told me the tests would be negative before I even had them.
I had been ill 25 years, and she knew that the spirochetes had changed form, and my body would not be making antibodies against the variant form.
She asked if I'd ever had antibiotics for anything, and when I answered yes (pneumonia and bronchitis), she said the tests would be negative.
The book, The Lyme Disease Solution, explains why fairly well.
Don't give up. Continue with your LLMD, they will know how to treat you, and they are able to treat based on clinical diagnosis.
The tests are so unreliable, that they don't need a positive test to treat. That's documented fact!!!
Posted by Starfall1969 (Member # 17353) on :
My Lyme tests came back CDC negative (I think it was one band positive and one band indeterminate on each test), but my LLMD is still treating me.
I was crushed too when the tests came back, especially when the one for babesia came back negative.
Just hang in there and wait for your LLMD's opinion.
Likeothers have said, Lyme is often a clinical diagnosis.
Posted by liesandmorelies (Member # 15323) on :
As the others have said, many are negative and then later go on to be positive.
I was negative on at least 3 tests and then later tested positive. I was sick for quite a while and finally the test showed positive.
Lyme Disease is supposed to be a clinical dx and the tests are only supposed to be used to back that up and or help support that.
Don't lose hope. See what your LLMD has to say.
Hugs,
Posted by sutherngrl (Member # 16270) on :
Don't let it get you down. I only had a positive band 41 and have treated LD for one year. I understand how you feel.
It is an added stress to being chronically ill not to know for sure if you are treating for the right thing.
But.....everything else has been excluded, and I know how ill I am, so, so far it makes the most sense. Does Lyme makes sense to you? If so then treat!
Did you use Igenex? I only tested through Labcorp. But my LLMD made a clinical diagnosis with band 41 to somewhat back it up.
After one year of treatment, I am thinking of testing again, this time using Igenex.
Also, you could try the challenge or just see what your LLMD says.
Liesandmorelies, how long before you tested positive?
Posted by Lymetoo (Member # 743) on :
Post your positive bands here, please!! We'll help you interpret them.
Also go to Medical and read Dr C's WB Explanation. a MUST read!
Posted by hope4sofia (Member # 20577) on :
All of your replies have been very encouraging. Lyme diagnosis does fit both my symptoms and my history. I have been tested for everything under the sun.
I have had some of what seems to be herxing since starting treatment. And, I have not had night sweats in the past 6 nights. If it's not Lyme, it seems to be reacting to antibiotics anyway.
I don't have the final results yet. I will have them next week and will post them then for sure.
It helps to know others have continued treatment with negative results. I know My LLMD believes this is Lyme and will continue to treat me. He warned me that the labs might be negative. I just HOPED so much that they would be positive.
Posted by liesandmorelies (Member # 15323) on :
Sutherngrl,
I only tested positive through IGenex due to the fact that they will do the two tier test regardless of whether or not you pass the first test.
Lab Corp would not run the Western Blot unless I tested positive on the basic elisa test, which I did not.
As soon as I tested through IGeneX I was positive. I would not recommend testing through Lab Corp. Just my opinion though.