posted
my question is this: why bother getting the western blot when everyone says it really doesn't matter if it comes back + or -
my LLMD said that there may be people out there who would get the same results as I did, but not have any symptoms....does this mean they don't have lyme?
i hear time and time again that the tests are not reliable and really don't mean anything...so why bother getting it done because they are expensive to pay for out of pocket.
mine came back positive Igenex, negative CDC for both IgM and IgG.
IgM- 31 + 34 + 39 + 41 IND
IgG- 31 + 39 IND 41 ++
Posts: 55 | From North Carolina | Registered: Dec 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Thats why I used labcorp and my ins paid for it!
LD is a clinical diagnosis; but the test can be used to back up the clinical diagnosis.
After being ill for over 4 years now and treating over 2, I still don't see why ppl would pay out of pocket for Igenex testing. Many ppl get positive test through labcorp!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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however, i have used labcorp in my town and the staff were rude, understaffed, stressed out....i've never been so scared to have a needle in my arm.....
anywho, it's done, the money is gone.....
i know the test is used to back up the diagnosis, but i've heard so many people say here on lymenet "your WB was positive, then you have LD" and then folks (including my doc) say it doesn't definitively mean Yes...that's my confusion....
Posts: 55 | From North Carolina | Registered: Dec 2007
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posted
A test result, combined with good clinical care and observations and the patient having Lyme symptoms is what helps the LLMD decide whether or not you have Lyme.
I think $200 for an Igenex test... the best there is... is worth it.
Your results .. and assuming you have Lyme symptoms .. indicate the need for treatment.
PS.. and if you have good insurance, they will pay for most of the cost of the Igenex test.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
The Western Blot does tell your LLMD some things. First, that you have indeed been exposed to borrelia. So, that along with symptoms shows you have Lyme Disease.
Some people have the exposure and not the disease because their immune system fights it off.
The fact that you have band 31 on IgG indicates you have had it for quite some time. That band doesn't turn positive for a year after exposure. I had 3 or 4 pluses on that band, so it shows I had it for a very, very long time, which was the case.
Even though it's a clinical diagnosis, the Western Blot is a test that supports the diagnosis. There are other diseases that have similar symptoms, so it's good to do this kind of differential diagnosis (for example, my LLMD also tests for celiac disease and other things that might cause the symptoms).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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this has become a very challenging situation for me (as it is for everyone).
my biggest challenge is going w/ my gut and pursuing lyme treatment even though the possibility of multiple sclerosis is present.
i'm scared that putting off the MS treatment will hurt me in the long run.
but i need to be confident that all signs are pointing at lyme and MS treatment will hurt me in the long run. my LLMD has told me to be positive that i've been able to be so healthy and strong the past few yrs w/ minimal antibiotic treatment.....she believes my immune system is strong...the MS meds would only supress it.
it's just so hard when mainstream medicine, friends, family, even myself sometimes, just don't get it.....i just want to know for sure what is going on and the proper way to treat it.
Posts: 55 | From North Carolina | Registered: Dec 2007
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posted
MS is a diagnosis with no known cause. It's clear that your Western Blot shows Lyme exposure. MS can be caused by Lyme. If you suppress your immune system it would only make the Lyme come out worse.
The only thing the MS "treatment" does is help with symptoms, it does not cure MS. Go with the Lyme treatment. We all go through denial, even those of us with positive WB's. Part of the problem is that it is counter-cultural to have Lyme .... MS is a more "respectable" diagnosis.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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quote:Originally posted by sixgoofykids: MS is a diagnosis with no known cause. It's clear that your Western Blot shows Lyme exposure. MS can be caused by Lyme. If you suppress your immune system it would only make the Lyme come out worse.
The only thing the MS "treatment" does is help with symptoms, it does not cure MS. Go with the Lyme treatment. We all go through denial, even those of us with positive WB's. Part of the problem is that it is counter-cultural to have Lyme .... MS is a more "respectable" diagnosis.
Ditto, ditto, ditto!!! "MS" is usually LYME. Lyme causes MS. Treatment for MS would make Lyme become WORSE.
So if you REALLY have only Lyme (the most likely scenario) then you would be doing yourself great harm by trying to treat MS only.
Go with the positive Lyme specific bands and get treated for it!!!!
posted
I personally wouldn't have believed I had lyme and wouldn't have been able to shell out all the money I have for an LLMD without a positive lyme WB. My doctor said Igenex was the best, and I believed them.
And, I had been sick for a long time, but Lyme was NEVER mentioned by mainstream doctors. Actually a FFC doctor was the one to test for Lyme ( I didn't even know all the tests she was running at the time) and then told me that I had lyme and I needed a LLMD to help me.
After having a CDC positive test, I did tons of research and understood the war that is going on in the Lyme world. If I hadn't had a positive test, I would still be wondering around wondering what the heck was wrong with me.
Posts: 893 | From Florida | Registered: Dec 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by tracisuzanne: i know the test is used to back up the diagnosis, but i've heard so many people say here on lymenet
"your WB was positive, then you have LD" and then folks (including my doc) say it doesn't definitively mean Yes...
that's my confusion....
Hah, no wonder you're confused --- your docs are confused!
This is why you hire a Lyme Literate physician. You need someone who is not confused to work for you.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
The Western Blot from any lab is frequently negative for people who do have Lyme. The tests are very rarely positive in someone who doesn't have Lyme.
The test shows the presence of antibodies to Lyme, meaning you have been exposed to the Lyme disease bacteria. The test can't find the Lyme disease bacteria itself and show you that it's there. The test especially cannot prove that it's not there and rule out Lyme.
If you are having symptoms that fit Lyme, and you also have a positive Western Blot, then you have Lyme (in my nonmedical opinion).
MS is a set of symptoms caused by advanced Lyme disease. Not every Lyme patient gets the same symptoms, and it's possible that MS has other causes in addition to Lyme (probably other kinds of stealth infections). But if you have Lyme, and have MS symptoms, they will be from the Lyme, or a coinfection of Lyme.
Therefore you need to treat the Lyme in order to get rid of all the symptoms, coinfections and opportunistic infections. You may also need other treatment for coinfections and symptoms. That's why you need an LLMD with the experience to figure out all these complicated things. Most doctors have no idea about it, and what little knowledge they have is usually incorrect.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
39 is supposedly a VERY Lyme specific band, the most Lyme specific of all.
41 on the other hand can be caused by many things. You would be CDC positive on the IgM if your 41 would have shown positive.
I would say you should strongly strongly consider Lyme exposure and/or Lyme as the cause of your issues, based on that western blot.
There are some good explanations of the bands out there, but I don't have them saved anywhere.
I don't like Dr. C's explanation, because I have heard one of the Igenex founders say things that contradicts Dr. C's, so I don't recommend that explanation as the most accurate.
It's not necessarily the number of the bands you get, but WHICH bands, and 39 is important. 34 is also supposed to be very important. Bands like 58, 66, etc are NOT Lyme specific.
Some are more specific, or more frequently associated solely with Lyme (as opposed to other infections). So I guess you could say there are the Lyme specific bands, the "kind of" Lyme specific bands, and the non-Lyme specific bands.
You could also get the Igenex band 31 confirmation test, and if that comes back positive, you can be almost 100% sure of Lyme exposure (you can't truly claim anything is 100% so that is why I say almost).
Posts: 4590 | From Midwest | Registered: Jun 2008
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I did it for confirmation. Yeah I could have pursued treatment but I would have always been left wondering if I was treating the right thing.
I had a WB done through a mainstream lab and only band 41 came up positive. When I tested through Igenex (after the abx challenge) I tested Igenex POS CDC Neg. But my bands POS and IND were all I needed.
Sometimes I have to pull out all my blood work and look at it to see if I'm treating the right thing. Because sometimes I feel like I'm getting nowhere. And my husband thinks the results should be instant, not understanding it takes time.
posted
i think i know exactly where i was exposed (prudence island, rhode island, july 2005) looking back, playing detective, i learned deer ticks carrying LD is a HUGE problem on PI.
i found "a bug" on my crotch while in the shower...which totally grossed me out and i quickly removed it, rinsed it down the drain....who knew?
2-3 months later i developed a weird persistant rash on my crotch that i thought was chaffing from my cycling shorts and tampon string.....
the doc said it was from too strong of a soap and rec. i switch to a milder one....looking back, i realize i had been using this soap for yrs without any problems.
funny thing is i remeber, during the exam, her saying "hmm, it's weird, it starts in the center and goes out in both directions in the same way"
then about 20 months later, i started noticing numbness in my fingertips (this is where it all began).
many weird symptoms since then.
many MDs, tests, lots of $ out of pocket.
lots of "we don't have LD in North Carolina" "that info about LD is a bunch of bulls#@t"...one of the neuros said this.
started seeing my LLMD in 2008.
did a course of antibiotics.
stopped them march 2009.
nothing since then.
felt good, except for ongoing hand numbness.
until, last saturday- BAD vertigo w/ nausea.
back to LLMD this week- will be starting back on antibiotics.
this seems like classic long term neuro LD case to me based on what I've read.
i tested positive on Igenex WB, both IgM and IgG my CD 57 count was low my vitamin D was low my brain MRI shows the spots that are often seen w/ lyme my spinal fluid shows the bands often seen w/ lyme i have/or have had 20-25 of the weird symptoms
you see, i have to CONSTANTLY repeat these things to myself so that i believe i have LD, and i'm treating the right thing, when everyone else looks at me like i have 8 heads.
when the neuros want to diagnose MS.
i get so tired of explaining (or trying to explain) my situation
Posts: 55 | From North Carolina | Registered: Dec 2007
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Just to confirm that band 31 only indicates long term exposure if confirmation tests 488 and 489 are positive (as per Nick Harris, President of Igenex)
posted
please help i am so sick all the numbness tinling burning severe fatigue now chills heat stroke feeling .i am young 43 all test normal pos ana after 4 yrs of demanding answers still none except i got an infectioud disease doc to do a western blot waiting for results .he said chronic lyme doesnt exist only to a bunch of people on the web who are undiagnosed . that all chronic lyme will show up on elisa. why dont these doctors want to help me. everyon test pos ebv and cmv and hhv6 he says everyones been exposed as common as chickenpox.i am hopeless i need a live person please any place or person i can call for help the internet is to draining. please please i am not well. bit by many ticks growing up in okla. please someone have mercy
Posts: 1 | From boston | Registered: Aug 2010
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posted
Need Lots Of Help - A positive WB is only the beginning of your nightmare. A lot of people are not even fortunate enough to get a positive Lyme test at all.
I have been battling my positive WB received June 1 this year. In and out of ER, Hospital, this Dr. that Dr.
Everyone will instruct you to find an LLMD. I believe that is the only place you will receive ANY help whatsoever. No other Dr. will "hear", "see", or run any test that will help your Lyme.
Still fighting in STL.
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
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YOU ARE NOT ALONE. There are many, many, many people here with so much advice for you. Thank God you found Lyme Net.
I will send you a PM. You can contact me anytime. We are in the same boat.
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
dakota14- Please post to a new topic. People on this site really do care, and you will get more help that way.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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