posted
So, everything came back negative. Now, I was already half insane waiting on these results and now I am even more insane because everything will have to be retested. I was on a) abx the week prior b) was also on anti inflammatory c) and had steroid two weeks prior. D) my immune system is very low now, which is evidenced by my blood work.
So, in my research I came across this article which I think is posted already but not from the same source, I thought it was interesting because it specifically talks about the sickest people sometimes test negative. I have to have Lyme, otherwise what do I have? ALS??? Everything else has been ruled out.
Nine Reasons for False Negative Lyme Disease Blood Test Results From the Lyme Disease Foundation brochure, Frequently Asked Questions About Lyme Disease
2. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies.
3. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on or has previously taken anti-inflammatory steroidal drugs These can suppress a person's immune system, thus reducing or preventing an antibody response.
4. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing.
For this reason, some of the worst cases of Lyme disease test negative -- too much bacteria for the immune system to handle.
5. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.
Posts: 27 | From Nor Cal | Registered: Jan 2016
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I know exactly how you feel.
I went through exactly what you're going through for a year. I spent just endless hours googling "band 41" - every piece of information I got about my health I would drill down into pub med until there was nothing else to read.
There are people who never test positive using antibody tests no matter how sick they get. There are people who just start treating and lo and behold TWO YEARS LATER during treatment after six negative western blots they are suddenly CDC positive.
Personally I wander around my house some days thinking...well...maybe I don't have it. It would be so great if I didn't have it.
And then I think back over allllll the evidence, the symptoms I've been experiencing, the length already so far of this ever changing illness and think...come on. Yes you do.
People have to realize that the way we are testing for these organisms is extremely primitive and barely works. That's the real reason people test negative.
If you've got it it is nearly impossible to mistake for something else. Doctors call it "the great imitator"because they don't have it. If it's in you, you know. Believing you might be insane for thinking so is one part conditioning and one part very excusable denial.
At this point -- don't worry so much about testing. Treatment is very safe especially when you are just starting out and there is no point in delay. The fact is you might never get official proof.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Hi - I actually enjoyed reading your heading, but will help you out of your confusion! I think the following info will help - it's from the top of Medical Questions, Stickie - Important Information on Lyme and Co's -
posted
Good point, Brussels - we're the ones "hiring" the docs, not the other way around.
Posts: 13116 | From San Francisco | Registered: May 2006
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Yeah, years ago (10?), I initially tested negative but after 2 months on abx. I tested positive. I was chronic and of course not producing antibodies to lyme. After treating for a small amount of time, immune system working better ='d positive results.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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