posted
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
Posts: 232 | From MN | Registered: Jul 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
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
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
My LLMD said if its IGG its neg. But his symptoms should be addressed. IGM is the sensitive one.
Posts: 18 | From New Jersey | Registered: Oct 2007
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posted
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.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
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
Posts: 314 | From east coast | Registered: Oct 2007
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
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?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
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.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
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
Posts: 232 | From MN | Registered: Jul 2007
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
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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