Husband got tested through Igenix and I only received tests over the phone, which stated:
"The test was negative and he only showed one positive (or +) by band 41..."
He still has numerous symptoms of Lyme though..Of course I don't want him to have Lyme like me, but I feel so sure that he does..
Can you have it with only one positive band? Laura
Posted by rubjord (Member # 13586) on :
hI
Was the band an IGG or IGM?
Posted by laura miller (Member # 12703) on :
I wish I knew..She didn't say..I would assume IGG, because he's had these symptoms for years. What do you think? Laura
Posted by CaliforniaLyme (Member # 7136) on :
Could be, could not be.
They really need to develope better tests- it must be terrible to have diagnostic quandaries-
I'm sorry- it must be stressful- Take care, Sincerely, Sarah
Posted by rubjord (Member # 13586) on :
My LLMD said if its IGG its neg. But his symptoms should be addressed. IGM is the sensitive one.
Posted by Robin123 (Member # 9197) on :
There are people who don't test positive, yet have Lyme. I know someone who got the bull's eye rash, and tested negative. So it's a clinical diagnosis too.
Posted by onthemend (Member # 13454) on :
Hi, when I was tested through IGeneX I had been sick about 1 1/2 years. I had nothing in IgG and a few 'INDs' and 1 '+' in IgM (I think it was 41!). My LLMD started treating me immediately anyway, based upon my history of symptoms and my very thorough set of tests which eliminated virtually every other possibility.
Two things happened: (1)almost immediate positive response to even a relatively low dose of doxy (after a few rocky days which I now recognize as a herx), plus (2) increasingly positive IgG as time has gone on. I'm up to 4 '+' or '++' (including 39) , and 2 IND, after 3 tests. I have never had a sign of anything in IgG.
I've been on abx 9 months (or is it 10 by now?) and they have saved my life, & made me increasingly better, though not cured. I just don't see how it could be anything but Lyme, despite my less-than-overwhelming testing profile. It just makes me believe further how little they know, how much is yet to be learned/understood about this disease, and how much we must rely upon ourselves to get properly treated.
Especially since you know Lyme yourself, I can't stress enough that you've got to go with your gut instinct. NO ONE wants to be improperly or unnecessarily treated, but what's the worst that could happen in the short run? Really clear skin? Just kidding - it's just that erring on the side of caution can't hurt him too much, while blowing it off sure can.
I hope you are able to figure it out and get on a good path for your husband, whatever it might be. But definitely, believe the most in yourself and your instincts.
Best -
onthemend
Posted by AliG (Member # 9734) on :
41 is not Lyme specific, but there are lots of reasons why you can test negative. I'm sure the ListLady will happen by soon with an explanation of that. There's likely also info in Treepatrol's Newbie Links thread, located at the top of the board.
I would think that if he's highly symptomatic and all the "rule outs" are done an antibiotic trial might be in order. An LLMD can usually tell by response to antibiotics if a die-off (Jarisch-Herxheimer) reaction occurs.
I initially had 41 & 23 positive with "classic" bulls-eye rash & massive symptoms. Next test completely negative. After a year of Txing first Babesiosis and then Lyme, I finally started seroconverting on the tests.
Has he been tested for co-infections yet? They can cause false negatives too.
Did he have a known tick bite?
Were there any IND bands? If so, which ones?
Posted by onthemend (Member # 13454) on :
sorry, to fix my post, it is my IgM that has become increasingly positive.
onthemend
Posted by Geneal (Member # 10375) on :
My neighbor, who had a clear and defined bulls-eye rash following removal of a tick
Only had band 41 show up. In fact, he can recall at least 3-4 bulls eye rashes over the years.
He is definitely symptomatic....but unfortunately in Major Denial.
Hugs,
Geneal
Posted by lymebytes (Member # 11830) on :
Since there is no test that is 100% reliable, you can have Ld with no positive bands. Lyme is based on symptoms and is a clinical diagnosis.
Is he seeing an LLMD (Lyme literate MD)? A pro at diganosing lyme is necessary for aggressive and updated treatment.
Did he have a CD57 blood test run through Labcorp? This could also shed some light on it. Information re: CD57: http://tinyurl.com/2khesx
Was he tested for co-infections as well? Very important.
Band 41 = flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia.
IgG = past infection/ IgM = current active infection. But it still is based on symptoms only.
Please make sure he sees an LLMD asap if he hasn't already.
[ 25. October 2007, 08:40 PM: Message edited by: lymebytes ]
Posted by disturbedme (Member # 12346) on :
I only had 41++ IGG show up postitive on my WB. I was in limbo, I guess you could say, for quite some time because this was the only positive band and I knew it wasn't lyme specific yet I was being treated for Lyme by my LLMD. He thought I probably had it, yet it was still worrisome not to know what was really going on. Once you get a positive test and/or some kind of tangible evidence, then it's possible to stop worrying. I've been there. I hated it.
Finally got a positive on a co-infection test for Bartonella. That was the answer/something tangible that I needed. Now I am pretty sure I have Lyme, too. Of course I could just have Bartonella and not Lyme, but I'm pretty sure I have Lyme, if not other co-infections as well.
I'd at least get him to an LLMD and let him decide what s/he thinks. Or do a co-infection test, etc.
Posted by laura miller (Member # 12703) on :
Thanks to everyone for all their awesome advice! What would we do without Lyme Net?
We discussed it this evening, and we are going to go ahead and see a LLMD for him, too. It's just not worth it in the long run not to pursue beacause of his list of symptoms...
AliG- He hasn't been tested for co-infections yet, so yep that's a possibility..And he has been biten about a 100 times- he's hunter and huge outdoorsman, so very likely for Lyme!
Thanks again everyone! Laura
Posted by 5dana8 (Member # 7935) on :
Hi Laura
This is what I know so far...
there are over 300 different strains of Bb & presently only test for a very few of them.
Till they develope better testing, Lyme should be a clinical diagnosis.
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