Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Basically I'm wondering if there is any meaning to the fact that I had 41 and 66 KdA originally, but a different test at a different lab showed 41 IgM and IgG positive.
Mayo clinic Lyme Disease AB is negative. I took that in March.
Then another WB last month with the double 41's.
I think what this means is that since I took the last test in January my immune system woke up a little due to several short courses of antibiotics. I started "self-treating" in Feb and just got more and more symptomatic.
Pretty much know for sure that I didn't get "re-infected."
Also why do I keep reading published studies about people who are seropositive as if this is an indication of anything? Is it because no one feels they can publish a paper about Lyme patients without a CDC positive?
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
posted
There is an explanation of the Western Blot test at the top of Medical, in the Important Info about Lyme thread. It says band 66 is a heat shock protein, the 2nd most common Lyme antibody. Well, I don't know about the 2nd most common part, but it is an antigen band.
Many people/doctors feel that even having one positive band like that is enough.
Band 41 show up for other spirochetal infections besides Lyme, so that's why by itself it's not indicative enough, but it's usually there for Lyme patients.
Seropositive you can take to the bank, that's why people say it - it's confirming. However, a negative result does not mean people don't have Lyme. 27 reasons for a negative result are in that same thread at the top of Medical.
You might get some benefit from reading through some of the explanatory material in the Important Info about Lyme thread there.
[ 01-22-2016, 04:43 AM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Thanks Robin.
What I mean is:
Is there any significance to the fact that I had 41 and 66 IgG on one test and then double 41's ( IgG and IgM) eight months later?
I had nothing on IgM a year ago, is what I'm saying. Now I do.
Or am I basically just trying to read tea leaves here?
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
oh my gosh I'm sorry Lymetoo AND Tincup.
Uh ohhhhhhh....am I getting Lyme Brain?
Sigh some more.
p.s. I swear I saw the name Tincup at the left there when I was responding. Trying not to freak out over here.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
If it helps, I've had my blood tested at three different labs on the same day using the same sample. All results were different. (All were positive, but all were different.)
And once you've taken antibiotics, all bets are off. That is only one of the reasons, often the main one, why test results will be negative even if you have Lyme.
And I've heard from tons of people who were tested at the Hold The Mayo Clinic. ALL, but one, were negative and they all had Lyme and most had multiple coinfections.
The one positive we had, a member here years back, well it didn't do them any good. They didn't treat him anyway.
False-positive they said.
There were happy days in my life, but few as happy as when I got my first positive Lyme test. ANSWERS, FINALLY!
I'd been horribly sick for a long time with no answers. So I know the need for having a piece of paper giving you the results you, well, deserve.
I'm sorry you don't have that peace of mind yet. It is disturbing. And I could say "move-on", but that would irritate me and make it worse if someone said it to me, so like Donald Trump would say...
I'm not going to say move on. I'm not going to do it.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey J...
LymeNotLymes just posted a WB list for you and others. Might be of help? Also see the link I posted with another list.
And while digging up my list I saw this...
"Lyme disease patients may not test positive for exposure to B. burgdorferi because their antibodies to the organism are bound up in immune complexes."
This is an OLD note, and even more important today since we know about biofilms, etc.
"An indeterminate number of patients with late or chronic Lyme disease are simply seronegative for unknown reasons."
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Thanks, actually...
I have an LLMD appt. on Friday and I was thinking about asking for Igenex but I then realized I had changed my mind.
If I know I've got it and he knows I've got it, then there's no more point to testing.
I don't think I've ever come to a more devastating realization in my life but more testing will not make this go away.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
posted
I'm bent out of shape alright .. but it's because I'm OLD!!
Jordana .. There's nothing wrong with the extra +'s and bands showing up. It's actually a good thing. Personally, I would do the Igenex test.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Maybe I'll still do it. To me at the moment it seems like just playing Bingo for Lyme, 400 dollars a game. Igenex positive tests won't make my insurance pay for treatment either way.
What's scary to me is that the more I look at all this the more apparent it becomes that no one knows how to find this thing, what it's capable of or how to treat it really. Sometimes antibiotics don't even work; not even guys like LymeMD are 100 percent sure what the antibiotics are even killing.
It's a clinical diagnosis because all the labs are nearly worthless. That's scary. And that's in 30-40 years of knowing it exists.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Jordana - Have you posted your complete test results here? Did any result/lab say positive?
What bands have shown up for you? Have you tested with Igenex before?
FWIW I tested four times with Igenex. Each time the results were a little different. Sometimes a previously shown band was "missing". Sometimes a new one showed up.
Eventually I did the culture test with Advanced Lab. Services and it came up positive.
I was fairly convinced I had Lyme Disease after my Igenex tests. The Adv. Lab. test confirmed it (assuming that test is valid - which the CDC says is not). (I still worry/wonder about this).
-------------------- 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
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Well let's see.
My first WB was in January;
IGM Negative IGG 41 66 KdA
Interp: Negative.
March Mayo Clinic Lyme Disease AB : Negative. They didn't give me any bands.
November 2015 Armin Labs
Seraspot Microarray for all bands negative.
Elispot Borderline (+2 when negative is less than 2).
This is an interesting point. In studies using the Elispot for diagnostic purposes borderline was read as potentially negative or cleared of Lyme ( after successful therapy).
All coinfections from Armin Labs negative.
CMV was active at that point according to their elispot, so was EBV. Two months later both were negative for current infection in traditional testing.
CD 57: 61.
Western Blot, December:
41 KdA IgG 41 KdA IgM.
Interp negative.
All coinfections negative ( labquest).
More esoteric:
Assay immunglobulin IgM Normal Assay immunoglobulin IgG Normal
C4a: Normal. VEGF: 151 HIGH TGF Beta 1 : 18,000 -- SKY HIGH. ANA positive
Transient low WBC, transient low neutrophils, Slightly low hemoglobin, high platelets, high RDW.
Symptoms move around but I sweat like a horse,night and day, get chills, undulant temp ( low grade), stiff neck, shakes and twitches, ratchety movements, low potassium, lost gallbladder, high blood pressure, tachycardia.
I had Bell's palsy that I only realized this was what it was later, when it was gone. Also occipital headaches, rarely in the front or behind the eyes.
The scariest thing I had which worries me to this day is that I used to vibrate in bed at night, especially at the back of my neck and shoulders.
The muscles at the front of my neck and the back of my head would start to just spit and twitch and spasm on their own.
I had a twitch in my upper left eyelid for six months, secretory diarrhea for six months that still bothers me sometimes, sudden UTIs. Freezing feet and hands.Stiff jaw.
Blurred vision, double vision, ocular migraines, floaters. Some days are better than others with this. No cough. Ear drainage. TMJ.
MRI was clear for white matter lesions ( as of May) except for two "ubos"in my frontal lobe.
Some days I have a shaky day, it feels like all these little twitches all over my body. Some days I have a sweaty day. Sometimes both.
Like you Bactrim made me normal again for ten days until my bladder complained. Minocycline makes me feel completely insane, so bad I can only take it a couple days a week. So...response to antibiotics.
So given all this...man if it's not Lyme I have no idea what it could be. I'm also taking the VEGF to mean Bartonella and the weird blood values to mean babesia.
Like I said, it's a clinical diagnosis because the lab tests are impossible to rely on. In March when I got the test back from Mayo I thought I was done pursuing Lyme. But I did not get better and no doctor or specialist could give me another answer.
............................................
(breaking this up for easier reading for many here)
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
I vote that you do the Igenex test.
I have not kept up with research on the bands - any new info - but some bands do crossreact with other illnessess. In the past band 66 was mentioned as being a cross reactive band.
To add: if you are doing more testing - were you going to retest EBV? You might ask for the EBV Early Antigen test. You showed in another thread being tested for the Nuclear Antigen - EBNA.
-------------------- 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
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I probably won't ask for anything else from an infectious disease doctor. Armin labs was pretty clear I had a positive monospot. Did it clear up in a couple months when i got the traditional testing?
Or is it still there?
It's just another one of those things docs *refuse* to allow into their reality. If it's not in their paperwork, it cannot exist. If it cannot exist, leave it off the paperwork.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
OK - I must have missed where you got a positive somewhere.
Now I am confusing myself. Positive Lyme or EBV. Sorry...........
Anyway, I'll usually ask to be tested for something that is concerning me. Maybe the doctor will say yes and order.
-------------------- 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
| IP: Logged |
posted
You already have a positive Lyme band with the 66 band, and Bell's palsy means Lyme. I don't think more Lyme testing matters.
Definitely Lyme and babesia, bart is swollen lymph nodes, sore foot, often nightmares, raging - don't know if you have any of that?
For stopping all eye symptoms, I drink mangosteen juice daily. I get the Mango-Xan version from the health food store. I drink around an ounce a day.
Have you played around with any magnesium supplements yet? That will help ease tight/twitching muscles.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Hi Robin--
Is 66 really Lyme specific? I read somewhere a long time ago that it was but then it seemed the opinion changed and it was no longer looked at that way and thought to be common to all bacteria.
I agree though no more testing is really necessary. All this messing around trying to get an ironclad positive is part of what makes people sicker.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Ask the LLMD when you see him if additional testing (Igenex?) will change his plan.
Posts: 1737 | From Virginia | Registered: Aug 2011
| IP: Logged |
posted
Hi Jordana - the link at the bottom here is from the Important info about Lyme and co's at the top of Medical - it's what I'm going by when I said band 66 is a Lyme band.
So when your article says that band 66 could be cross-reactive, that is new info for me and I think the topic needs to be run by those who can better answer that, like Lyme doctors, unless there's any folks here with that kind of new, updated understanding about reading the WB.
Anyone else here care to chime in on this question? Take a look at the article Jordana found and compare to our WB explanation here.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Thanks Robin. ![[lol]](graemlins/lol.gif)
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic