seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I got tested one more time at LabCorp last week. the LLMD did a Lyme WB - both IgM and IgG. All bands completely negative on both. Of course, Igenex finds a bazillion bands back in 2/09 and one other time. This is SO tough to swallow for me when all other commercial labs showing nilch.
This time I tested normal on all other Dr. S (mold guy) recommended labs. Normal MMP-9, normal Anticardiolipins, normal ADH/Osmolality, normal VEGF Plasma.
I'm fighting an invisible enemy and it's not showing its face anytime.
I don't know how much more of this mystery I can take. Every time I see one of these completely negative tests I have a harder time buying into this Lyme theory.
For goodness sake, another lab should be able to find SOMETHING!!!!!!
LabCorp has a very interesting notation under the results now. See below:
Sera from individuals with the following may cross-react with Lyme WB assays: other spirochetal diseases (periodontal disease, leptospirosis, relapsing fever, yaws, and pinta), connection autoimmune (RA and Systemic Lupus Erythematosus and also individuals with ANA); other infections (RMSF; EBV and CMV).
WOW. Makes you go hmmmmm.....what if Igenex catches positives due to these 15 reasons above? Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I feel the same way.
Posts: 222 | From NH | Registered: Mar 2011
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
It does make you go hmmm!
I only tested through labcorp, so I don't have the Igenex thing in my head. It is interesting all those other possibilities listed.
I don't know what to tell you. I started out with no bands positive, but after a year I got an IGM pos through labcorp. I went ahead and treated with the completely negative test in the beginning though.
I feel for you, cause I know what it feels like to need that test to be positive. I don't think the negative test proves that you don't have LD. But I get why it bothers you.
I guess you could start checking all those other options and see where it leads. If treating one of those makes you feel better than there's your answer.
Have you checked the viruses out? Have you been tested for RMSF?
Maybe your body is posting an autoimmune reaction. My doc says that LD can trigger an immune reaction that calls for at least 6 months of treatment with plaquenil or a similar medication.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Because you have been sick so long it's not even in your bloodstream. I'ts moved on and has penetrated into your tissue's, muscles, brain, WBC's, RBC's etc. Think about how impossible it would be to find antibiodies in that little amount of blood that you send to the lab.
And if your immune system is shut down you probably aren't even making antibiodies to have a positive test.
Bands were found at your earlier testing. I believe you have LD plus whatever else it's just not in your bloodstream anymore.
Has Dr. M hasn't told you about this?
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Maybe you have no lyme just the mold and the parasites. If you are not ok after treating those then you can do a spirostat lab.
Posts: 1834 | From US | Registered: Oct 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
SG, I have been tested for all those viruses. I 'may' have EBV as I have elevated EBV-EA titers. Everyone has elevated IgG titers who ever had mono so it's meaningless. The rest are normal. I seem to show less viruses than many here.
I have tested 4-5 times at LabCorp w/o any bands over the years. Igenex found 4 positive bands on IgG and 4 IND bands in the same test. There were 4 positive bands on IgM too, but none ever hit a combo to put me CDC positive.
Yes, just having one cross-check outside of Igenex would mean a LOT to me. i don't 100% trust them as I'm sure you all know.
Hey Bigstan, I've been wondering where you are. Nice to see you back. PM me sometime. Oh Dr. M never said that to me. Honestly, I don't think he thinks I have Lyme as he hasn't said it in years. it's weird. You know the issues he believes I have and the same tests he repeats when I see him. A cycle that goes on w/o a final answer.
Karenl, even though my mold inspection came back OK via air samples.....I still wonder. I may be underestimating my reaction to even little amounts of spores or something. I wonder what the EMRI would show in my house even though the inspector said it's a very suspect test in his opinion?
All I know is I can't see straight. My eyes/head feel swelled up. Uggghhhh...
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I think Igenex tests for two strains, while Labcorp tests for one?
I know Igenex say they have better equipment, better lab testing, but I wonder if the varying results has little to do with this, and simply the fact they test for an additional strain?
There are lots of flavors of Borrelia, like there are for Bartonella, etc. that they simply don't test for.
So I wouldn't rely on testing alone to say you have Lyme or not. If you haven't improved at all on any meds, then I'd put more stock in that, than a lab result.
And even if you have Lyme, yet treated for a long enough period with no results, and no difference on or off antibiotics, then further antibiotic treatment probably doesn't make sense anyway.
Posts: 584 | From NY | Registered: Feb 2009
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posted
Most of the bands on the Western Blot can cross react with other things. Some of them cannot. Band 39, for example, does not cross react, not even with other borrelia species! Only the one that causes Lyme disease.
Bands 31 and 34 I believe, cross react with viruses... Band 41 cross reacts with spirochetes such as those that cause periodontal disease, and syphilis... And so on.
No, other labs "shouldn't" be able to find anything, because they are not as specialized as IGeneX. If they were, more people would know they have Lyme for sure, and we wouldn't have to scream at everyone "GET TESTED BY IGENEX!" to help them save their life.
My immune system is not up to par, like many of ours aren't, so a lot of the time I can only show an "IND" band, too. It's just a weak positive.
I've tested through LabCorp and Quest innumerable times, probably 10 by now, and they all come back negative. But my Igenex recently came back positive... Not even that, but I had a new band, and one that showed the bacteria were now resistant to my fevers. Is it any coincidence that during my Lyme flares I haven't been getting fevers the past three months? These little devils evolve to evade our immune systems; it's not a theory.
Igenex is also the only lab able to pick up my antibodies to bartonella, and we've tested for that more than we have the Lyme: Always negative even though I have every symptom in the book and respond to treatment. Now, at least I have the antibodies to back it up, but for three years, I didn't. The bugs don't care whether or not they show up on our poor quality tests.
I think you need to stop placing so much value on a test that even the CDC says is terribly flawed and useless.
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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Hubby used to worry about not having any bands either -- but since he got his babesia duncani results and now the rocky mountain spotted fever he doesn't doubt his diagnosis nearly as much.
And then it helps that he has had positive responses to various antibiotic/antimalarial protocols.
I remember one of hubby's earlier docs saying that you didn't need to have all the answers to get well -- just enough so that you could get your immune system back on line.
Look for a long post from me in the next week or so. In researching Chinese herbs I ran across a new protocol I have never seen discussed in any of the lyme forums before. Sounds very promising for people who can't take antibiotics or have more or less unknown illnesses. Not totally convinced the protocol will work for babs or bart, but it definitely sounds promising for lyme, viral infections and some other issues.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
@seek, if you have 150 to spare, let me know.
@bea, are you by chance speaking of 'gu'?
@ bigstan- nothing stands to reason with this illness. I was sick for 18 years without diagnosis and still pulled a positive (9) bands IgM western blot x2....so, it can still remain within the bloodstream and we can STILL produce antibodies...just sayin'
@seek, maybe your missing link is fungal? this is what i'm learning about myself.
Posts: 3975 | From usa | Registered: Aug 2007
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
I've never had any bands show with Labcorp but numerous with Igenex. I did have band 41 show up when tested by Arup lab but that was the only one. Yes, it makes you wonder - doubt - crazy - I know.
-------------------- 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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posted
I had very extensive testing thru lab Corp and igenex. Negative blot here too as well as negative for co's. Normal Cd57. But.. All the clinical symptoms of one co infection. You may have a co and that's your issue. That's what I found out!
Posts: 96 | From USA | Registered: Jun 2011
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
You could always try bio-energetic testing. Just another tool in the belt. It's supposed to be better than blood testing.
be sure to use someone highly recommended. If you live near me, I'll give you the name of the person I use.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
My Doc told me that The newest most sensitive test for Bb is developed by Neuro Science. Check out the MY Lyme Immune Id.
My LLMD suggested it cuz I've had many positive Elisa's - never tested at Igenex but this new test is supposed to difinitively show if you now or ever had lyme. It does not test antibodies, so even if you've stopped making antibodies it can tell if you currently or in the past have had Lyme. It could say past Lyme infection - if so you can count on the co infections causing current symptoms.
Posts: 348 | From MA | Registered: Dec 2010
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Seek Looking backwards I think the puzzle went this way for me. I was first weakened by some exposure or some problems that knocked my immune system down. I now think whatever is in my house .. since I got sick about 3 years after moving in. And then.. i think that I started to get infections that I would normally fight off and old ones activated. I mean I first showed up with Toxoplasmosis and Valley fever and H Pylori and E Hystolica and EBV and HHV .. all of them and then.. well then the Lyme and co infections.. and and and.
For me. It does not matter anymore what I got. It matters what got my immune system knocked down and how to reverse that. After all these years the damage may be done. But to be away from my home has done amazing things for me. I can not even say. And so now if I can gain strength and detox and keep treating any of the infections if I even have anymore I believe I will finally recover.
I could be wrong. But it is all making so much sense to me now and I feel so hugely different.
To be honest. If I just stayed this way from now on it would be a big win for me. I am not sure where I will go from here but again I do think there was something from the start that put my body in a place where it was starting to pile on infection after infection and that same thing is the last one standing and fighting back at me and I am getting rid of it finally.
I am sure it is different for every person and that is why I have read here to learn from everyone. And i thank all those who post and have taught me where to look and what to try in order to find those answers that I would not have thought off.
THANK YOU
GOD BLESS
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
seek -- I would recommend you seek out a naturopath/acupuncture type person who has vials or the like of a variety of infections (lyme and coinfections and other bacteria, viruses, fungus, mold, and so on) using energy testing / ART. Clearly the blood tests aren't working, this should at least point you toward if infection is a problem and, if so, which ones.
Posts: 1927 | From se usa | Registered: Mar 2010
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