posted
So depressed. How could they all be negative?!?
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.
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
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
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
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.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
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!!!
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
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.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
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,
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
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?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
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.
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
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