groovy2 thanks for the reply, it sure seems like a very involved test, I was actually surprised that it only cost $90. One thing is for sure; the more involved the more chances for mistakes.Tincup thanks for your reply please see below:
Spitz "Come on, there are a lot of Lyme literate people on this site."
TC Yes.. there are. Unfortunately, none of them are practicing LLMD's .. sorry. None of us are able to diagnose Lyme or rule it out... test or not. We can only share experiences and literature for you to think about... and share opinions. It would be up to a LLMD to treat you for Lyme or not... or to determine if your history, symptoms, and test results add up to make Lyme a clincial diagnosis.
Spitz Understand, after my last three doctors, I don't have much faith.
Spitz "The test says at least two bands need to be positive for me to have Lyme, I have one positive and three Borderlines. Can you sort of have Lyme?"
TC Can you sort of be pregnant? Probably not. But if you argue your tests results with what we call an IDiot duck.. you will most likely never convince them of anything... and they will give you the standard.. "I don't know what it is... but it isn't Lyme". You know.. the A.B.L.S.- Anything But Lyme Syndrome. They still haven't read the CDC info that states that negative tests are NOT to be used to rule out Lyme... and that Lyme is a "clinical diagnosis".
Spitz I asked him about the CDC and what they state, he dismissed that.
TC Plus.. you said you only have one band positive? Maybe I am not seeing it correctly here.. but don't I see 6 positive bands? And 4 equivical?
Spitz Igenex states that two of the five double** must be positive, they do not count band 18 which really confused me with Dr. Jones'statement about band 18.
TC A band does not have to have multiple "+++" signs to read positive. If IND is equivical.. then one "+" shows reactivity. If there was nothing showing on that band.. it would read "-".
Spitz "I went to the infectious disease doctor today, he said if I had Lyme the Western Blot would have spelled it out, it would have been obvious."
TC He is full of bologna.
And he has misread the tests. But that isn't anything new. He told you several things that were wrong... sorry.
Spitz "He said he would guess my chances of having Lyme is about 20%, not enough in his mind to give antibiotics."
TC And a dope too... hmmmmm.. sounds about normal for that kind of duck. We have maybe 4 ID doctors who know ANYTHING about Lyme. They are VERY good. The rest are so stinking rotten even the local dump won't allow them within 200 miles of the place.
Spitz "So I'm not sure of what I have. Lyme, maybe."
TC Did the ID duck bother to run tests for coinfections? That would have helped. Did they do a CBC, ANA, or any other tests? If it isn't Lyme.. what did they say your problems were from?
Spitz He said the first two doctors did not run enough test. The first two were neros so they ran only nero test, this doctors was an infectious disease doc so he ran infectious disease test, 9 of them, waiting on results.
TC My bet is they didn't say what you had.. just that it wasn't Lyme. Am I close?
By the way... This doesn't look like an Igenex test. Was it done by another lab?
Spitz It was Igenex, by the way I had the Western Blot done a month ago by LabCorp, band 41 was the only positive one on that.
Spitz "The LLMD doesn't take my insurance."
TC Blame that on the ducks and insurance companies.
Spitz "This is getting old."
TC Yes.. thousands before you have thought so also. Please be sure to let the health departments, CDC, medical boards, etc. know how you feel. THEY can do better and not make it so hard for folks to get diagnosed and treated.
TC You said you were concerned about the 18 band and the 39 band because you feel those are the best indicators of having Lyme.
Since they show positive on your test.. what exactly is the question you still have?
Spitz Why Igenex dismisses band 18.
TC Also.. what were the results of the other half of the test? The IGG? Any bands there?
Spitz I didn't include because if I have Lyme it has been for over a year however band 18,41 & 58 were positive and bands 30,31,39,45,& 66 were borderline.
TC Try reading some literature by Tom Grier for better Western Blot explanations. Then perhaps it will be clearer for you.
The Wilder Network has a collection of Tom's articles.
Spitz OK Thanks
Robi, thanks for your input.
Lyddie, please see below:
Lyddie Our LLMD would say you definitely have Lyme with a positive 39 band, which is specific for Lyme and cannot be cuased by anything else (I have researched this myself, to see if, for instance, autoimmune illness coud cause a positive 39 band but the answer is no).
Spitz I was under the same impression.
Lyddie I believe the 39 band is positive later than the 23 and 41 bands, so it usually means the Lyme has been around a little while- but I'm not sure on that.
I was positive on band 41 on the IgG and on both on the last western Blot
Your 41 band is indeterminate..it wojld be strange to ahve a positive 39 and a negative 41, but it isn't negative.
A good Lyme doctor could interpret all this for you. Presumable you are having symptoms,
since you had the test in the first place.
Spitz Yes, weakness and numbness in hands and legs, a lot of the classic Lyme symptoms, only thing I don't seem to have is any pain.
Lyddie If you go on antibiotics, your Western Blot mayb ecome much more definitely positive. Mine did.
My son had only the 83/93 band positive and I am taking him to Dr. D in Boston today. Three of us have Lyme, he's had classic symptoms in the past, but is fine now (most of the time). I am still having him checked out by an LLMD.
Spitz Good luck, I hope it turns out well
Thanks everyone
Spitz
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