My dr called with results (will get formal ones on wed) and they said that while I don't have lyme (aka I don't have all 5 bands) it is present in my system. I have Igg bands 41 and 66. I was reading this website http://www.anapsid.org/lyme/wb.html and it said you have to have two @ bands for Igenex to say you have lyme, but it says 66 isn't an @ band. Am I correct in saying that I wouldn't be considered to have lyme? Looking for someone with a little more knowledge Posts: 20 | From Northern VA | Registered: Aug 2011
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Lyme is a "clinical" diagnosis. A good LLMD would diagnose based on your history and symptoms. The test are used to back up that diagnosis.
Sometimes if you don't have a positive test to begin with, it will turn positive after a few months of treatment. Thus backing up the clinical diagnosis.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
It depends upon whether the two bands are on the IgG or the IgM. It makes a difference.
You SO WISH you didn't have Lyme, but the jury is not out. How do you explain away the two bands you have?
Can you explain away your symptoms?? (I assume you have them or you wouldn't be here..??)
What Melissa Kaplan wrote about the IgM showing recent infection is not entirely true...not with Lyme.
Read here:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result."
posted
List of Western Blot bands and explanations (from various sources)
9 cross-reactive for Borrellia
12 specific for Bb (Lyme)
18 flagellin fragment (Lyme)
20 may be cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb. Can be an early band.
28 OspD. Specific for Bb (Lyme).
[23-28] Potential for Central Nervous System (CNS) involvement.
30 OspA- substrate binding protein- common in European and one California strain. Check for mycoplasma.
31 OspA, specific for Bb (Lyme).
34 outer surface protein B (OspB); specific for Bb (Lyme).
35 specific for Bb
37 FlaA gene product- specific for Bb (Lyme).
38 cross-reactive for Bb
39 BmpA- a major protein of Bb flagellin; specific for Bb- Sometimes found in those with joint involvement. It is the most specific antibody for borreliosis of all bands.
41 flagellin protein of all spirochetes. This is usually the first to appear after a Bb infection and is specific for all Borrellia. Can be positive due to relapsing fever, oral spirochetes and syphilis. Flagella or tail protein. Flagella is used to move Borrelia burgdorferi from point to point. Many bacteria have flagella. This is the most common borreliosis antibody.
45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis). Heat shock protein. This helps the bacteria survive fever. The only bacteria that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein- Check for viral infections
60 cross reactive for all Borrellia
66 Oms66- cross-reactive for all Borrelia, common in all bacteria- Check for E-coli
83 high molecular mass protein. Specific antigen for the Lyme bacterium. This is the DNA or genetic material of Borrelia burgdorferi. It is the same as 93, based on medical literature. Laboratories vary in assigning significance to the 83 versus the 93 band.
93 an immunodominant protoplasmic cylinder antigen, associated with the flagellum. Possibly the same protein as in band 83, just migrates differently in some patients.
NOTES:
When reporting bands, the reporting laboratory marks bands with the following indicators of intensity: - Not present + Low ++ Medium +++ High +/- Equivocal = indeterminate (present, but not as intense as the "Low" reading)
Other bacteria besides Borrelia burgdorferi may produce the 45, 58, 66, and 73 kDa bands.
Some patients might have an IgM response at the time of the EM rash. The IgG response tends to start several weeks after infection and peak months to years later. In some patients, the IgM response can remain elevated- in others it might decline, regardless of whether or not treatment is successful.
Many Lyme disease experts believe it is a mistake to exclude 31 and 34 kDa antibody proteins from the list of significant bands.
Lyme disease patients may not test positive for exposure to B. burgdorferi because their antibodies to the organism are bound up in immune complexes.
An indeterminate number of patients with late or chronic Lyme disease are simply seronegative for unknown reasons.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Again-- thanks guys for getting back to me. I didn't get any notifications like I had been, so I didn't think anyone had answered my post (hence, posting again). I know that the western blot did not go through igenex. I have my followup next Wednesday and will get copies of all my paperwork and will let you know who did the testing and exactly what it reads. I may call and see if they could fax or email me a copy of it so I can post sooner. I realize now that you can't really help me until you see it all since there is a lot more than just the bands involved. Was just hoping-- you know how that goes. Posts: 20 | From Northern VA | Registered: Aug 2011
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posted
Glad you found the thread again!! As far as I know, Lymenet does not send email notifications when someone replies to your thread.
so... get back to us when you can!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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James1979
Unregistered
posted
Actually, if you click "full reply form", there's a checkbox underneath for receiving email notifications. It's hard to find, but it's there.
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posted
Hi all-- not much of an update yet, unfortunately. When I got my western blot results from my doc, they were very unspecific-- just told me what I already knew... that bands 41 and 66 were reactive. No pluses, minuses, etc.. not sure if that only shows on igenex's WB or if it was all.. but they gave me a printout from the dr's office and none of it was on there. the dr of course wants me to see a rheumie. I had a lot of frustration after I left that office.. feeling what most of you have felt at some point-- hopelessness and losing hope in doctors. A day or two later... I had an odd feeling in my face...twitching for a day or so randomly, and then it felt like novocaine was wearing off on one side of my mouth for an hour or two. I know this can also be a sign. It didn't stay too long and hasn't happened since.
Posts: 20 | From Northern VA | Registered: Aug 2011
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posted
immune suppressants being steroids? or are there other things they prescribe? i know now that steroids obviously make it worse. also, for an LLMD visit, is it better to get the igenex testing done prior and bring it in? or go to the LLMD and have them put me through the process?
Posts: 20 | From Northern VA | Registered: Aug 2011
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posted
ARgh. Get to an LLMD but fast!! If it sounds like lyme, tests like lyme, it probably is lyme!
My IgG and IgM tests were all equivocal for band 41 and 66. I started doxy a few days ago and am herxing all over the place.
As has been said above - lyme is a clinical diagnosis - not based on a blood test alone! Besides, if you are concerned about auto-immune disorders, I know that several LLMDs that I've seen can also perform this type of testing to rule out RA, lupus, etc.
Posts: 348 | From NJ | Registered: Sep 2011
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posted
Just save time and go directly to the LLMD. If you can't get in for months, then try to get a GP to sign off on the test for you and get it done ahead of time so you know where you are.
There are many immune suppressing drugs like methotrexate, for example.
posted
thanks guys. i am actually quite excited right now-- my friend knows someone recently diagnosed with lyme and she forwarded me some information for a free lyme seminar in my area. There will be locals, people to tell their stories, etc. Hoping to get a good referral if I don't have an appt by then. Will be good to meet others in the area dealing with the same thing.
Posts: 20 | From Northern VA | Registered: Aug 2011
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Lyme doctors in VA are very booked up. Get on a list SOON!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I strongly suggest you go to one of the doctors I recommended to you. If you don't still have my message to you, let me know.
I am hearing a lot of really bad stories from folks seeing some of the NoVa doctors.
If you are given names at the lyme seminar, be sure to ask about those docs on here. The choice of a doc is a MAJOR decision that affects your health big time, and will consume a lot of your money. So, do a lot of research and choose wisely.
Otherwise, you will sooner or later be starting over with a new lyme doc and paying the big bucks over again for another first appointment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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