Hi everyone, I went to see my neurologist today for the results of a lumbar puncture. I am wondering if anyone can shed any light on the results:
Borrelia IgG antibodies (EIA): negative
Borrelia IgM antibodies (EIA): positive (higher than 1.3 is positive, I had 2.2)
Borrelia IgM antibodies (Blot): questionable positive
OspC band: questionable positive
Borrelia IgG (L): negative
Borrelia IgM (L): negative
.... but my neurologist claims I don't have Lyme??? Comments?
The other finding was "identical oligoclonal bands in serum and liquor" - what is the significance of this? The lab personal scribbled a note on the findings saying "suspected oligoclonal gammopathy" - what does that mean in plain English?
I'm not medically trained, so anything I say here is just words ... but here are some thoughts:
-- Lumbar punctures are NOT (in the view of most Lyme specialists) especially useful in diagnosing Lyme, because Lyme bacteria are generally not found in spinal flluid, which is what a lumbar puncture samples.
-- That said, getting a positive (even a questionable positive) for OspC sounds pretty significant and should make the doc at least curious imo.
-- The other somewhat positive results might also peak the interest of a Lyme doc.
Given that spinal fluid is not the normal place for a Lyme doc to look for evidence of Lyme because it's not terribly reliable, the fact that you show up even mildly positive might cause a Lyme doc to do more tests and pay some attention.
Your doc may have called it a negative despite the mildly positive results because the standards for many tests require several positive aspects of a certain strength, because the tests can misidentify some molecules -- thus docs/scientists will set a bar of at least 'X' number of positives to be sure it's an accurate reading.
Here's how I think of it: In school, I used to mix red paint and blue paint to make purple paint. At what point does the paint truly become purple and not just reddish blue or blue-ish red? If you want to be really, really sure it's truly, truly purple, then you have set a requirement of 1/2 cup each of red paint and blue paint. If instead you only have 1/3 of a cup of red and 2/3 of a cup of blue, then is the mixture really purple, or is it still sort of/kind of blue? NonLyme docs set the bar really high, while Lyme docs are more forgiving.
About gammopathy, you can search those terms and wikipedia has writeups on them. My Lyme doc didn't do any lumbar punctures, as they are not a good test to determine Lyme or not.
In your situation, I'd take the test results and go find a Lyme specialist. To have any many positive/nearly positive results not particularly used to diagnose Lyme, it seems like a prudent thing to do.
Thank you Jackie, that's a big help!
I'm somewhat stymied, because the only Lyme specialists in this country (Germany) seem to be doctors in private practice who don't accept patients covered by state health insurance. Still, where there's a will, there's a way.
I've had these symptoms for 15 years now (dizziness, headaches, neck pain, visual disturbances, swollen painful glands, weak muscles in my legs, tremor and tingling in my right arm, night sweats... you name it) and until now I was told I had conversion disorder. Thankfully I have a new GP who doesn't believe in writing people off as having a psychosomatic illness.
Glad you've found an understanding GP -- that is often a portal to finding other helpful doctors and resources, through the GP's awareness of who else thinks progressively on these things.
In some states here, the medical boards have sanctioned, punished or driven out of practice MDs who do not follow the IDSA (Infectious Disease Society of America) guidelines, which hold that Lyme is easily cured with a couple of weeks of antibiotics, and any remaining symptoms are not continuing illness, but the body's over-reaction to a disease that is no longer there. Not logical, but it's the only contorted explanation they can come up with as to why patients continue being ill.
Many of us here have the same issues with insurance, and while some insurance companies will pay the full cost of whatever treatment is needed, others will not, and we end up paying out of pocket ourselves. It's just the way it is. I don't regret anything I've spent on getting well, because there's nothing more important.
Let us know how you do ... and look around online for a sympathetic doc ... we have had posters here from Europe (esp. northern Europe) and I have read quite progressive views in European medical journals -- Scandinavia comes to mind, but also Germany, if I recall correctly. Because of the controversy, many of these progressive thinkers try to work quietly so as not to attract unwanted attention from troglodyte bureaucrats.
Disclaimer...I'm not a medical professional, just a frustrated newly diagnosed Lyme patient who had to do a LOT of research on my own after 12 doctors couldn't figure out what was wrong with me.
I already had a lumbar puncture scheduled to look for signs of multiple sclerosis, sarcoid, and cancer after my neurologist found about 20 brain lesions in my MRI. The night before, I was doing my own research and came across Lyme disease. I asked him to consider it, so he added a Lyme antibodies test to the lab order. He also ordered a blood test. Both came back negative, so he concluded I didn't have Lyme. At that time, I'd had symptoms for 15 months.
A month or so later, when I was in the hospital and I told them I thought I had Lyme, they told me that the Cerebral Spinal Fluid test is "a highly accurate test", and therefore I did not have Lyme.
(Actually, I do. I've since tested positive for Lyme and Bartonella at IGeneX in Palo Alto, CA.)
In my research online, I've read that significantly less than half of late stage Lyme patients who had lumbar punctures tested positive in the CSF. Most of us just don't have any antibodies in our spinal fluid. It doesn't mean we don't have Lyme. Lyme suppresses the immune systom. My new doctor says their sickest patients often test negative, as their immune systems are no longer producing enough antibodies to show up on a test.
Considering what the hospitalist told me about the CSF test being very accurate, I presume that means it's highly accurate at finding antibodies (not at diagnosing Lyme). That implies to me that a positive result is very significant, and that a negative result means nothing. I would get another opinion from someone who knows about Lyme.
Ah, I only found your answer now, but thank you very much! Unfortunately I have found that the Lyme specialists in this country only take private patients - state health insurance won't cover more than a couple of weeks of antibiotics during the acute phase. So I am still going without treatment. There is a major Lyme centre not far from here, but I simply can't afford to go there *sigh*
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