I just joined the board recently but have kept low b.c I do not have a diagnosis yet. I was orginally sent to a rheumotolist to rule out Lupus or any Autoimmune diseases.
I did get a start and found a LLMD in my area...however I cant get in til january.
So I let the Rheumy do the bloodwork on me. ALl for Lupus came back negative or any other autoimmune.
My vitamin D came back at 13 (which was low) SO she is putting me on a mega dose.
My EBV (this is how she worded it) "chronic" and "acute" both came back high.
Everything else was good.
I am just looking over my results myself on the Lyme test.
IgG was negative ..no bands present
IgM came back negative with only Band 23 present??
I did read the Western Blot explanation..but everything just isnt registering.
Should I go ahead with the LLMD or do you think I can rule out Lyme b/c of the results>>
I am SOOO sorry of any of this has been asked before. Like I said..I am new and trying to figure this all out!!!
any feedback would be appreciated!
Tara
Posted by Lymetoo (Member # 743) on :
I would go ahead with the appointment. I don't have time to look right now, but I'm almost positive that band 23 is Lyme specific... nothing else could make it show up.
The EBV is important and needs to be treated. I doubt a rheumie would know how to treat that. An LLMD would.
Also.. the lab used for your test is likely not a good one... probably doesn't even test for ALL of the possible bands. (seriously)
So, either order a test kit from Igenex now and get your rheumie to sign off on it.. or wait until your apptm in January to get it done.
Test #188 and 189 is what most of us order
Posted by Tarav (Member # 22942) on :
ThankYou Lymetoo!!!! I am going to kept the appt.
I guess sometimes you just need reassurance from people that have been there before. B/c these docs are constantly making me feel crazy!!
I appreciate the post!!
Posted by TxLymie (Member # 20847) on :
I have bands 41 and 23. My understanding is 41 is not necessarily specific to lyme but 23 is.
I also don't have time to research right now but I think my memory is correct on this.
I also have chronic EBV. In my opinon this might be worse than lyme because I am so fatigued most of the time. I will be curious to hear what your LLMD tells you to do about this.
I also had low vit D and was put on mega doses. within a month I was back to normal so hopefully you will be too. I know just take over the counter vit D.
Posted by coltman (Member # 21272) on :
Did you do igenex WB? -dont pay attention to quest or labcorp ones.
Vitamin D is one sign of infection. Cd57 is another one , VEGF is another one - I have quite a few labs showing abnormalities and they all together are indicative of chronic disregulation. You might have cpn,mol,viral infections or what else
Now I do also have positive igenex test (and had positive quest 23/41 IGM -but on 2nd run it was clear - giving their dubious thresholds of reporting bands you cant rely on it)
Posted by Tarav (Member # 22942) on :
No this was through Labcorp. I wont be able to see the LLMD til January and My Rheumie wanted to run her bloodwork on me to rule out autoimmune.
I just wanted to see of I was headed in the right direction with all of this. <3
Posted by 22dreams (Member # 17846) on :
Tara,
Even if you have one band positive, the tests are for antibodies not for the presence of the bacteria.
To be considered for use as a diagnostic tool, the sensivity of a test must be 95% or better. to give you an idea, the sensitivity of conventional HIV tests is 99.5%.
The sensitivity of tests, even at the better labs, runs in the 70s.
and there are any # of reasons why someone would test Negative even if the tests were perfect.
Why there's a need for Clinical Judgment in the Diagnosis and Treatment of lyme. and why it is critical to see a LLMD to rule it in or out, and to address any other tick-borne diseases.
Patients with "high" antibody titers against HHV-6 IgG ≥ 640, EBV VCA IgG ≥ 640 and detectable EA Ab at 1:160 or HHV-6 IgG ≥ 320 if EBV VCA IgG ≥ 1280 and has detectable EA Ab at 1:160 (measured by the average of a minimum of two time points obtained during screening at least 3 weeks apart).
![[Frown]](frown.gif)