posted
I really think that I have Lyme. I have had a tick bite (no EM), and very, very strange symptoms matching many found here and elsewhere. I"ve had a pretty extensive workup, including blood work, MRI/MRA, etc.
If I was bit in January would one expect my IgG and IgM to come back positive if tested in June? Before I make the step to have more blood work drawn and use a specific lab like Ignenex, how often are false negative's encountered yet someone still has Lyme?
ONe more question. Thinking that I have Lyme, I started oral Doxy 3 weeks ago (400 mg/day). If I draw my blood work now, have I screwed up the readings?
I can provide more detail if desired. Let me know what you all think.
BT
Posts: 299 | From New Hampshire | Registered: Jul 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Treat by clinical symptoms dont worry about tests there falible for many reasons.Get a LLMD
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
That's what I'm worryied about. Will my equivocal malaria now come back negative because I took some of my Larium before I knew this?
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posted
My LLMD said that taking antibiotics will, if anything, increase the western blot positives.
All my Lyme tests came back negative, including the Igenex one...this according to CDC criteria. My Igenex test however was positive for specific Lyme bands (but not enough of them to make me officialy positive). This and my neurological problems(burning, tingling, twitching, eye pains etc.)was enough for my LLMD to say that I have Lyme 100% and start aggressive treatment. Of course, all my MRIs etc. came back negative as well.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Bob
The current tests for lyme are perty much useless -- and cause much damage with False Negatives--
My Tests came back IND -(Inditiminate)- I was super sick at the time--
I had a Big bullseye on my leg weeks before I got sick--
I had my tests done 17 yrs after infection-
I think tests are Most accurate a month or so after infection and goes down rapidly with time --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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I was also wondering whether me starting myself on Doxy would affect a re-test. According to one post, it shouldn't.
Does anyone else know an answer to this?
I'm going to my PCP today and I'll ask her.
I need a LLMD, I'm going to get her opinion on that today too.
BT
Posts: 299 | From New Hampshire | Registered: Jul 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Heya Bob.
Your PCP won't know the answer.
Or worse -- they'll make something up to appear authoritative.
Here's the thing: Being on Doxy MIGHT be a good thing .. IgeneX Lab, the best there is, might recommend something called 'antibiotic priming...'
The idea is that really sick people frequently don't make antibodies. Also, borrelia burgdorferi is expert at evading the immune system. Thus, a false negative is not unlikely - especially in the initial, nearly-worthless ELISA.
However, enter the 'antibiotic challenge.'
A couple weeks of doxy will "prime" your immune system. Kill some spirochetes, and give your immune system the nudge. There is thereafter an increased likelihood of some b. burgdorferi antibodies in your blood at time of testing.
I've heard a regimen of about 10 days abx, followed by a week or two of none. Then test.
Clear as mud?
Also, you can call Nick Harris, the doc at IGeneX -- he'll give you his take on it. Extremely personable and smart guy. May I add he also likes to fly fish, so he can't be all bad?
Insist on using IGenex and doing a western blot. Your doctor will NOT know these things. However, that usually does not stop them from pretending to know.
Here's just how bad many of the typical lyme testing labs are. Are you feeling lucky?
"The first and most common test your doctor usually orders is an ELISA antibody test. Again, if the Lyme is hiding well or your immune system is fair, you will come up normal. Specifically, the ELISA test missed 56% of confirmed Lyme patients (Archives of Internal Medicine 15:761-0763, 1992).
In another study, it was in some ways worse. In this one the ELISA test missed over 70% of people with early Lyme disease, and 46% with late manifestations of Lyme. (Laboratory Medicine 21:299-304, 1990). Meaning, it missed 70 out of 100 people with the early disease. But it was still negative after the bug was in the body for a long time -- still missing 46 of 100 seriously infected people. ...
In one study, 55% of the labs could not accurately identify blood samples with Lyme, which led to the conclusion in a prestigious infection journal, that: screening tests for Lyme disease are not adequate (Journal of Clinical Microbiology 35:537-543, 1997).
But the routine Western Blot typically done has massive errors. In one serious test of the Lyme Western Blot testers, there was a stunning finding. They used nine clearly infected patients and sent their blood to 18 labs. Of the IgG type of antibody, some labs were wrong. They missed 10 of 18 samples. For the IgM type of antibody, the labs were occasionally so bad they falsely reported Lyme as absent in 16 of 18 samples (Arch Intern Med 150:761-763, 1990)."
(Excerpted from Dr. S article)
Posts: 3193 | From Northern California | Registered: Apr 2005
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi Bob, my nephew was on doxy just before getting his Igenex test. We asked the LLMD if that would mess up the test and she said, "No, keep taking it."
Hope that helps.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
If you were not tested through Igenex, your probability of a negative result is MUCH higher. Remember, as Michelle said, the LYME SPECIFIC bands are what is really important when a test comes back negative.
Most "regular" labs do NOT test for all the possible bands.
Read again what Michelle wrote and then read this:
posted
An apparently false negative threw me off course until I finally learned just how high the false negative percentage is on the "simple" (i.e. inexpensive) tests.
From what I can gather, PCR testing is generally considered to have the lowest rate of false negatives.
A revealing blood test you can do is for vitamin D ratios. The 1,25D to 25D ratio is typically elevated in those infected.
Posts: 727 | From USA | Registered: Mar 2006
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
No blood test including Igenex is 100% reliable. Lyme has and always should be based on clinical diagnosis, symptoms.
Many have had negative LD tests,yet still had Lyme.
One or 2 tubes of blood will not always catch the bacteria, it prefers the tissue anyway.
There are other tests Igenex can do. But if you know you have been bitten, EM rash, no test is necessary you need treatment.
I was on many many months of 300mg doxy & used a cr@p lab (quest) and had lots of bands lite up omn my WB. Actually one band shy of CDC positive.
Treatment has made a big difference in my lyme disease. Can't really tell by my typing but could not have typed this much (Almost 4000 posts) before my last treament. I had really horrible neuro lyme.
Hope this helps Dana
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but could not have typed this much (Almost 4000 posts) before my last treament. I had really horrible neuro lyme.
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