Topic: More Proof on how screwed up Lyme Testing is !!
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
So, originally, I had pos. Igenix bands 39 and 41.
Was tested through Labcorp and Quest multiple times before starting treatment and No Bands at all showed up, yet C4A was 6000 or so and CD57 was very low.
After 2 mos. of treatment, I ask to be retested through Labcorp. This time, I have an IGG on Band 18 but not anything else.
So this would mean since my last testing which was only 4 mos. ago, I was exposed to fragments of the flagella, which is what band 18 is.
Now how does that make sense ? It doesn't.
I've been megadosing on Vit. D as I was undetectable 2 1/2 years ago and have taken the 50,000 IU on occasion and 2,500 IU daily, yet my level is just 22, still outside of normal. There appears to be some type of correlation between vitamin D and this disease.
Then I take my sister in-law to my LLMD to be tested as she hasn't felt good for a few years. She complains of fatigue, non-restorative sleep, doesn't respond to AD's, Thyroid remains low despite mega dosing of Synthroid, complains of body aches, excessive weight gain and more.
So she gets her results yesterday and she is CDC pos. for band 39 and 41 through Labcorp. C4A is 5000+, Vit. D is very low. Typical findings in just about everyone I've met.
I feel like I can pick out the disease on people now knowing all of the signs/symptoms. Lyme is so big, it's sick, and the world is still in the dark. I wonder how long this will all go on for.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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My sister has been chronically ill but functional. She had a negative western blot (LabCorp) years back (tested before me). Her labs are just like mine and yours, only her CD57 is actually lower than mine.
She feels ok most days now (but has some really bad days/weeks), and is contemplating whether or not to do further testing and treatment. She has chronic reactivated mono as well.
We have never lived back east, but I will agree with you that this disease is a monster in the dark. The only doctors that are generally paying attention are the ND's. MD's are generally on their own bandwagon.
And my sister had an EM rash years back (maybe 6 or 7 years). We didn't know what it was, and the doctor gave her 10 days of doxy at that time. That is when she became ill. Nobody ever connected the dots.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I've been told that different bands show up at different times due to antigenic variability. Apparently even temperature can make a difference.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Band 18. I had positive band 18 and a year+ later (after 6 weeks of Ceftin) that band disappeared (as well band 28). TerryK - your answer helps in regards to my post about bands "hypothetically". Why "now you see me - now you don't". Was it Dr B who used an example of elephant trunk like band 18? Did the Ceftin make my band 18 go away? killed/cleared something? or just went into hiding? Band 18 is LD or some other related "creature" like a Rhino? What else could band 18 be? from?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Further (sorry) why does Igenex not consider band 18 significant?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
They are still learning like everyone else.
Maybe they will discover another new species???
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Sorry , I just think the lyme tests are a way to make money for the labs and docs. They are super expensive and they really don't prove anything.
If my llmd runs tests and it comes back negative he/she still will treat me with abx depending on how I feel.
If it comes back positive, I still get the same abx.
To me the labs don't prove anything so why do they keep running them?
-------------------- I am not a doctor and am only expressing my opinions...please do not take this as medical advice. Posts: 44 | From US | Registered: Jun 2009
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Yes,all is screwy. I am thinking that some Lyme informed doctors will not treat without "proof positive" tests. Even if you test and come back with some positive bands, there is no agreement on which bands are Bb. Wonder, why are those bands even tested? I mean really, you ask for tests for LD yet some of the bands are listed as "unknown". Except for band 41 where alternate Dx is offered - the other questionable bands there is no info/mention of other "bugs" that might cause a positive that could help with Dx other than LD. I am effectively house-bound and don't know how much longer I can deal with this. I had hopes for Dx/treatment but so far none really. I am feeling sicker and sicker and down to no hope left. Reliable testing too much to ask for.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
twister, Just FYI, the flagella of all spirochetes, incl. Lyme, when it "breaks off", is responsible for the body making the 41(kDa)-long anti-body.
The relatively short antibody, designated as 18 kDa on the Western blots, is known to bind to a piece of a LYME spirochete... that is, it's "Lyme specific".
When present along with the '93' band which is ALSO a "Borrelia burgdorferi genus specie specific antibody", it indicates exposure to a strain that's known to cause primarily neurological issues, such as neuroborreliosis.
Atleast that's what my LLND told me, who also suffers from the disease, & has done MUCH research on it.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
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