posted
I am highly suspicious of Lyme but my doctor told me that my western blot shows an inactive infection. And yet my symptoms persist...
My ELISA was 1.37H
I was negative for all IGG bands, but I tested "reactive" for IGM band 41 KD. It was done by Quest labs about a month ago.
I know that's not enough for a "positive" reading. But what does it mean to have the 41 KD band? Is it just a false positive, or could it be from a similar pathogen like Babesia?
To further complicate things, I was on antibiotics (Cipro and amoxicillin) for about 10 days prior to the test. Does anyone know if this could affect the results?
Any insights are appreciated. This is all just so incredibly frustrating and confusing.
Posts: 390 | From Oakland, CA | Registered: May 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I too had a Quest Western Blot, only that I consider myself very lucky as IgM band 23 was positive.
That's it...No other bands. However, I did have 54 out of the 75 symptoms on a Lyme symptom list
And had already been tested for everything else under the sun...Ana, RA, HHV-6, EBV, CMV, etc.
I did not know about Igenex at the time.
Wish I did.
Yes, antibiotics can alter your test.
Igenex recommends being on them for 28 days prior to testing, with a ten day break before pulling the blood.
This supposedly increases the chance of more positive bands showing up,
Due to bacteria die-off and triggering of your immune system. (I believe)
Remember too, that Lyme is a Clinical Diagnosis.
There are people here who have been negative via Western Blot and have Lyme disease.
Get the right test done and find a Lyme Literate Medical Doctor.
BTW, I know of a family (4 members) who all had Quest and LabCorp Western Blots done that were completely negative.
All were CDC positive via Igenex Wester Blot.
And before someone can say that no one has a negative Western Blot via Igenex, one of my neighbors did.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
41 is not specific for Lyme disease but you don't need a positive test to have Lyme disease.
It sounds like your doctor is not "Lyme Literate" so I would find an LLMD!!!
I don't know whether you have Lyme or not.
Good comments above!!! Would listen to them!
To learn more about the WB do a search here with "Western Blot" and it will pull up multiple good threads!!! Best wishes, 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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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Yes, I'd get tested by IGeneX.
I know several people who have had negative IGeneX Western Blots ... they had some positive bands, but not enough to be a positive.
They're all getting treated for other issues, but will eventually get to the Lyme, and probably retest ...first the mercury and candida ... but, yes, there are IGeneX negatives.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I have a negtive Igenex test, but I am still being treated for Lyme, with a clinical dx. I am responding, and herxing, so I have no doubt it's what I have.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Thanks to everyone for their helpful responses! I'm so glad I found this board. I have an appt with my ID Doc on Monday and will definitely insist on the Igenex test. (I expect this will take some convincing.) I assume they test for other tick-borne stuff too?
Thank goodness, I was able to get an appt with an LLMD, only 10 days away.
Can someone clue me in: what is herx-ing? An adverse reaction to antibiotics? I feel scared.
Posts: 390 | From Oakland, CA | Registered: May 2007
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quote:Originally posted by Lyme ED: Your ID doc is *extremely* unlikely to order a test from Igenex.
Ditto to that!!
We "herx" when the antibiotics kill the spirochetes. The spirochetes throw off toxins when they die.
It's the toxins that make us feel even worse than before.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I'm confused about the Western Blot in terms of it always showing positive if you've ever had Lyme; is that true, and if so, how can you tell if you have Chronic Lyme or not? Especially if the symptoms are coming and going. This is happening with my son.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
You need to call Igenex and order the test kit for Lyme.
It doesn't cost anything to get, but it will cost 190.00 when you send it in.
It takes about 3 days for it to get to you via mail/fed-ex.
Any MD can sign the order for the test.
The basic IgM and IgG Lyme test is test numbers 188 and 189.
I believe (from research done on Western Blot)
That as time goes by, the less likely you are to have a "positve" Western Blot for Lyme disease.
Sometimes IgM bands are more indicative of a long standing infection than a recent one.
That is why you need a Lyme Literate Medical Doctor.
For me, as I never saw a tick and never had a rash, it has been
Difficult pin-pointing just about when I may have contracted Lyme.
However, as my memory improves, I believe it to have been the month I got pregnant with my second child (July of 2002).
That is when my Ob-Gyn believes I may have had West Nile disease, however, I did not have fever.
Please get to a LLMD.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
My first lab tests came back quite positive, and neither were from IgenX. I guess I should feel "lucky" to have been so easily diagnosed, isn't it? As Dr. H puts it: I hit Lyme Disease Bingo. On the WB, among several other bands, the following showed up: #34,39, 93 (and 41 also). These were done at a lab in Massachusetts. So the good news is that I never had to convince anyone that I might have undetected Lyme--it was easy to detect, once I was tested!
I agree, it's quite frustrating to not know when I first contracted the disease. I've had a handful of tick bites through the years, was twice treated with three days of ABX 'as a precaution', both times without having any testing done. I didn't know any better at that time.
I could certainly have had Lyme for a long time. Who knows? It's one of the mysteries of life for many people with Lyme Disease I guess.
-------------------- To our good health, Pippifern Posts: 36 | From Cape Cod | Registered: Apr 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
My husband was first diagnosed about 8 years ago, and received about 3 weeks of treatment. He was subsequently treated about 3 other times over the next 3-4 years for "relapses", with about 4 weeks of abx. He just had a "routine" Western Blot done at his annual physical. He is still having symptoms. It was done by Quest, in Massachusetts, and showed:
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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