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Posted 4/28/2016 10:56 PM (GMT 0)
I was seen by a doctor who doesn't have the official tittle of LLMD but is on the ILADS list of doctors who treat Lyme here in Southern California. He was very thorough and seemed genuinely concerned about my health. in regards to my Igenex lab results, he explained that its might be a yes and it might be a no. He put emphasis on band 83-98, said that band 41 isn't specific to lyme, and that 31 being IND was not significant in his opinion. He said had it been positive, that I would definitely have a positive test. He wants to test for co-infections because according to him my symptoms are more associated with some of them.

Any thoughts or opinions are welcomed; questions as well.

RESULTS

Genomic - B Burgdorferi NEGATIVE
Plasmid - B Burgdorferi NEGATIVE

IGENEX - IGG - RESULT NEGATIVE
CDC/NYS RESULT NEGATIVE
41 kda +


IGENEX - IGM - RESULT NEGATIVE
CDC/NYS RESULT NEGATIVE
31 kDa IND
41 kDa +
58 kDa +
66 kDa +
83-93 kDa +
Posted 4/28/2016 11:16 PM (GMT 0)
If he's saying that if band 31 was a + that you'd be positive - well...that's a 'fine line'...

The bands being negative, IND or positive are based on the lab tech's interpretation - I would imagine there is 'grey' area...


And, as Dr. H. said when speaking at the recent Summit - if you score high on his questionnaire (>46), have good days and bad days, migrating pain, memory/concentration problems and have had the following ruled out: B12 and Folic Acid deficiency, thyroid issues...etc.AND you have a + on any ONE of these bands: 23,31,34,39,83/93 you need to think Lyme Disease. So if you scored high on the questionnaire, because you had band 83/93 + then you should be considered a positive.

His words (but not a direct quote) on band 31: If you had the lyme vaccine, it cld produce a false positive -BUT it's so long ago that the vaccine was used - that it is not likely to cause it.
Also - EBV can cause it to be positive - BUT that is rare.
The band 31 epitope test - will confirm it's lyme (or viral)
Then he went on to say it is RARE for band 31 to be something else...it is USUALLY from lyme.

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Little Moe - you do know that the co-infections testing are not reliable - many false negatives - even more than lyme disease. I hope he will still treat you if the co's are negative.
Posted 4/28/2016 11:28 PM (GMT 0)
Hi Little_Moe, the good thing is that you found ILADS doctor who is going to treat you, although he should know that Lyme is clinical diagnosis and tests are not specific. I hope you will feel better soon!

Girlie do you know what Dr H says about band 34? Can EBV cause false positive band 34?
Posted 4/28/2016 11:49 PM (GMT 0)
Nope - in that list I posted - he considers lyme specific- band 34 is there - no exceptions - except rarely on 31.
and even 31 - it's RARE to be EBV he said.
unfortunately I can't post a link - it was from the Summit...and that's expired now...I think?
Posted 4/29/2016 1:54 AM (GMT 0)
Hi Moe -

I totally agree w/ Girlie about the interpretation and the context she provided. Very good analysis.

I also wanted to throw this out there... I've heard a couple of well-known LLMDs state this and my LLMD and my LL-gastro echo'd the same sentiment and I'm agreeing w/ it more and more: I think MOST people have lyme and there are reasons why some react to the infections w/ symptoms and some people don't. And these tests are simply a (very, very archaic and ineffective) formality that the medical industry and insurance companies need because there is so little understood about lyme.

Some people have a DNA-predisposition to manage the lyme infection well, some people don't. I don't know if there have been studies done regarding the other coinfections, but I'd bet there is a similar DNA-like response. Also, people walk around in various states of health and this will affect how you manifest the infection. Some people (like me) suffered for decades because I was told it was fibro, CFS, MS, stress, all in my head. So for that time period, I "didn't have lyme"--in fact, doing the math, I'd bet that most people who have symptoms associated w/ lyme & coinfections haven't yet been diagnosed and aren't in treatment. There are other reasons why some people get sick, some don't.

But I like that your MD might focus more on the coinfections because what really matters MUCH much more than test results are your symptoms and that is what drives most clinical diagnoses and treatment. I think that is a good sign about your MD (even though we disagree with this interpretation of your lyme test).

-p

Post Edited (Pirouette) : 4/28/2016 7:57:02 PM (GMT-6)

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