Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Lymenet Family >>>>>.
Altho' the words and letters "Lyme Western Blot and IGM/IGG appear on my test results...
I was not given, a Western blot. Instead, they lied and said they weren't allowed to give out the kDa numbers, and passed the buck to a specific lab in Texas.
They explained , from the TX lab,that it was actually EIA [read 'ELISA']. I went searching on the net and since Aug. of 2014, per "orders from above [read IDSA and CDC], they must do the 'ELISA' or the IFA [read 'ELFA']. If those do not come up CDC positive they do not do a Western blot.
Then to confuse the patients, and likely many doctors, they do use the terms ' Lyme Western Blot and IGG/IGM 'they also add the word 'Reflex' ,and the letters Ab somewhere in the title of the test.
The local lab flat out lied about the kDa's and said they weren't allowed to give them out. The Texas lab, says well we don't measure kDa in the 'ELISA'.
I am angry right now, and TxCoord isn't exactly happy. We don't like being lied to. If you are doing an 'ELISA' [EIA] or an 'ELFA' [IFA] say so... don't couch it in deceptive terminology.
So of course it often will not come up positive in a Sero-negative Neuro-Borelliosis patient.
Well, the Neuro doc' had an IFA done w/ my other blood work to see what it reads[they can show many other issues as well.
When Labcorp does the numbers,it is made to look like it is an 'equivocal',and then they say..."Oh no, you are misreading the test. I got into a number of sites w/ others that had the same problem,and were confused and upset also.
Trying to calm down, not a happy camper here.
GrrrrOOOOOWwoooooooolllll.
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
This might of happened to Jordana too...not sure.
Unbelievable.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< momindeep >>>>>,
It is just difficult to believe, why lie when the truth serves better.
To our minds, it is intentional deceit. So very maddening.
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
They really (REALLY) should not lie about it. Most patients wouldn't even know what a western blot is, so why lie about it? Call it an ELISA and be done with it.
Many insurance companies (MOST?) will not pay for a WB unless the ELISA is positive .. you are correct.
So, what is the next step? Any chance to get a real WB? Someone posted recently about how to get one without doctor's orders.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Of course it was a few years back; but I had several WB's done by Labcorp. And.....my insurance company paid for them. Problem is that now days ins companies are charging more and paying for less. It's ridiculous!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Lymetoo and sutherngrl >>>>>,
Not sure what we are going to do next,as far as testing.
I am curious, if the Neuro will tell us, what the IFA['Elfa'] shows,or if anything unusual shows up in the Neuro' blood work evaluation.These tests at the Neuro's request were from Quest.
The Labcorp test that they lied about was for my PCP,at slide fee clinic. My last Lyme test,before the Labcorp one,was from Igenix in 2006.
My last brain scan before the Dec.28,2015 MRI,was also in 2006. It was a CT scan. neither the PCP or the Neuro' would look at it.It isn't on disc. Neuro Doc' said, he didn't see anything unusual in my MRI, just "signs of aging."
We are exploring options,as to the possibility of an Igenix test again. Right now, I have to get some teeth worked on 1st. We have to pay for most of that out of pocket.
The tooth I am having pulled ,Medicaid pays for,so that is at least a little help.
For us, the issue is still that the VA has a ' wait-list ' on who gets paid,if, and when[or what ever one wishes to call it]. They can say they don't but it is obvious to many , who received promise of proper help and pay,and have found it to be lies.
Thanks for the replies, we haven't given up yet, Tired tho 'we are.
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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The Labcorp test that they lied about was for my PCP,at slide fee clinic. My last Lyme test,before the Labcorp one,was from Igenix in 2006.
- Was it positive? I'm not sure I would get a second test if the first one was positive. It will cancel it out (in the minds of idiot doctors) if it comes back negative.
The VA needs to get their act together. No one in America is happy about the way they've handled things for our treasured veterans.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Lymetoo >>>>>,
My Igenix Western blot was not 'CDC positive',but they said ,please have it clinically Dx'ed.
It was weird, and they mentioned the vaccination situation,as I had a 34kDa positive,and then also 58 kDa positive, with 31,39,and 41 Indeterminate on the IGM.
The IGG was31,34,and 41 Indeterminate. We were given the name of a clinic in the Seattle area[My dad lives up there] that was Dr. K trained[hope that's okay to say].
They sent me to a Clinic and team in Utah,who unfortunately could only treat on a limited basis. And then got reshuffled, and we couldn't get a hold of them after a few visits. it was discouraging for all.
I did Rochephin IM,84 injections[Oct.2006-Jan.2007], as we didn't have insurance and couldn't get help in Idaho to do it IV. I also tried Mepron,2 bottles just before my insurance had run completely out.
I've been self treating on Buhner, modified protocol since then. I can't take full doses of most herbs.And very few ABX,are safe for me anymore.
So tho' it was considered a "negative" the test showed clinically significant issues in 2006.
On the Vets,one of our church members is working to help straighten things out, and he said even getting phone tree help is hard, high turn over rates. Everything goes thru the phone trees now. it takes several minutes to get thru to a live human.
Oh, I don't think the Bart' problem is in my Sig' line but it was my first Dx' at the Seattle clinic. And they were about 98and1/2 % positive about the Lyme, this is before the Igenix test.
The heart MVP issue actually showed up during an evaluation in Utah. I had always wondered why my heart beat so oddly,and sometimes overly fast, with palps'.
During the fen/phen investigations some years before 2006, I saw something weird,the group that was trying to keep from paying out for phen/fen damages told me, well some folks hearts just look and sound a little sloppy. It was during a test, I forget what they are called. I got to see my heart beating.
Now,I know that it was MVP, and a ballooning valve I saw. Glad I never went up to full dose on the Phen/fen mess. I was warned that that is usually Babesia. And a blood smear later[2011],shows some odd stuff.
Better close for now, I'll check back in later, making more appts. w/ various drs. and dentists tomorrow.
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Just me again...forgot to mention. I did not have the vaccination, that Lyme Ricks mess,or know about it until after the Igenix test.
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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