She was diagnosed with MS about a year ago, has stopped one of the Disease Modifying Drugs due to a sensitivity issue.
Through the wonderful world of the internet; I somehow convinced her to get an IGeneX test! She did, and of course it came back negative... BUT with positive bands!
Here are her results: IgG 39 IND 41+
IgM 23-25+ 30+ 58+ 31, 34, 39 IND
Btw, she's confused, scared, inundated with all the info about lyme and asked me to post her results! Nothing new here either, poor thing! and she has an ear and sinus infection (had one last month) and is again on Amoxy,,,,,and feeling lousy! hmmm
She is leaning towards trying Tysabri a MS drug....but golly gee when I saw her results: imo, she's like me....She has Lyme Disease!
Any help and opinions would be greatly appreciated! I hate sounding like "everybody" has Lyme!
The best and thanks, tory
Posts: 158 | From PA | Registered: Oct 2006
| IP: Logged |
posted
Thanks for posting this, tory!! You're a great friend!!!
About that new MS drug....I have a friend who almost died from one of the new MS drugs. I'm not sure which one, but she was in intensive care for quite awhile.
With that WB result, I would definitely TREAT for Lyme!! Hers is "more positive" than mine, I think!!
Band 39, even if IND, is VERY SIGNIFICANT! Since she has been taking immune suppressing drugs, it is unlikely that her test will show a high positive on the bands. I would strongly say that an IND is "good enough!"
Band 23-25 is also very Lyme specific!!
I'll be back in a minute. Be sure to refresh your screen as I will be adding info.
"If enough of the complexes are formed, eventually it may be seen with the naked eye as a dark band. - Band intensity reflects how dark or wide it is. Controversy exists about band intensity.
Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track."
===================
"The following is a brief explanation of the test results. Again, each band is an antigen complexed (bound together) with an antibody made by the immune system, specifically for that antigen (part) of Borrelia burgdorferi.
18: An outer surface protein.
22: Possibly a variant of outer surface protein C.
23-25: Outer surface protein C (osp C).
28: An outer surface protein.
30: Possibly a variant of outer surface protein A.
31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).
37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.
39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.
58: Heat shock protein.
66: Heat shock protein. This is the second most common borrelia antibody.
73: Heat shock protein.
83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi.
In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93."
from lymetoo:
WOW! She has tons of significant bands!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
This gal needs confirmation, and one opinion (mine)doesn't make it..
As for the Tysabri? I believe you got it right. According to my doctor, he doesn't have a problem with anyone staying on their DMD drugs...EXCEPT for Tysabri!
He says that SCARES him!
I too have heard not so "good" stories at all about that drug!
If only these folks would learn about Lyme Disease!
anyway thanks again, and if anyone else has an opinion....I welcome it!
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I agree with Lymetoo. I have friend with MS and Lupus who I wish would listen about Lyme and get tested.
It can't hurt her to stop the MS meds and try Lyme treatment to see what happens. If she herxes, and it sounds like she already is herxing on amoxy, then you have your answer.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
posted
Also check into www.cpnhelp.org if you haven't yet. That website believes that c. pneumonia causes alot of problems including MS. They have some really good success stories over there so your friend can see that antibiotics whether for Lyme or c.pneumonia might be what she needs.
Posts: 984 | From San Diego | Registered: Nov 2006
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
None of us can diagnose her, of course.
However, her IgM sure looks blazin' positive.
If she showed the 41 band, it would be CDC positive, which is kind of freakish since that isn't even a lyme-specific band! However, to me this is even more compelling than some of the "CDC positive" tests I've seen.
Make sure she gets an LLMD appointment and at least a trial of antibiotics before submitting to endless (and often pointless) MS treatment. I know of which I speak, having an MS diagnosis too, but I don't have MS, I have lyme.
Good for you for caring so much for your friend!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
She's positive. No doubt about it. But the WB shows me something else too. Her immune system is caving.
As sick as she must be and with the "help" of the MS drugs (none of which have been proven to help MS patients) she is certainly going to feel worse on antibiotics. That's a sign right there that she has Lyme even if she didn't show any WB bands. Other opportunistic infections like the sinus infection are typical, too, as you probably know.
Getting people to listen is next to impossible. It's so much easier to accept a diagnosis from a doctor telling you he or she knows what's wrong with you, than it is to reach out into the unknown. And that's what Lyme disease is: the great unknown.
If it would help your friend, I could put her in touch with a gal diagnosed with MS who found out she has Lyme. She's getting treatment and getting better and thrilled to have Lyme not MS.
I gave a talk with her and another Lymie at a hospital in Wisconsin. PM me if you think your friend would like to talk to her.
You are a good friend!
Posts: 422 | From Luck home | Registered: Sep 2005
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
My daughter is being treated with a much less-positive test than that. I would see an LLMD if I were her.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
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!
![[kiss]](graemlins/kissing.gif)
![[shake]](graemlins/shake.gif)
Printer-friendly view of this topic