posted
First I had negative IgG and IgM Ab from Labcorp but I knew they were not very good with catching Lyme, so I got IgeneX done. My doc said I don't have Lyme but look at my results.
IFA, B BURGDORFERI G/M/A 1:40 TITER and the page says 1:40 means indeterminate, <1:40 means negative, and 1:80 and up is positive
LYME IgM WESTERN BLOT Negative except one indeterminate double starred band and the report says it may have clinical signficance and test with another method or retest in 4-6 weeks.
LYME IgG WESTERN BLOT Negative except one double starred band is positive and one double starred band is indeterminate.
Frustrating that I paid so much for these unhelpful "indeterminate" x 3. I read that other places are better at testing than IgeneX, but I didn't know that before I paid for their test.
They also tested Multiplex B Burgdorferi and it says negative 4 times for genomic serum, plasmid serum, genomic whole blood, plasmid whole blood. Does that mean I can ignore the indeterminiates?
It is hard for me to travel. Would an LLMD diagnose me from these results and my symptoms, or do I need retests? I can't afford to pay the labs.
For years I lived in areas with higher tick population. I think I could have been bitten without knowing or bitten but forgotten. I have most of the symptoms on the list but I am only diagnosed with CFS and Fibro so far. It took me a long time to be willing to pay for IgeneX and now I am worried the LLMD will be a waste. What do you think?
-------------------- Sick since childhood, a long time ago. Posts: 15 | From Midwest | Registered: Mar 2009
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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.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
[---- from DR C's update from 2005 --- ----The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.----]
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Thanks both of you. But he thought 41 before and now he doesn't? I still have the indeterminate 34 but it's not a positive.
-------------------- Sick since childhood, a long time ago. Posts: 15 | From Midwest | Registered: Mar 2009
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Bamd 41 is often the first to show, and band 34 is a Lyme-specific band. Please know that no test for Lyme is completely reliable. Sometimes people who have been sick for a long time test negative. A knowledgeable doctor knows this.
I recommend that you be evaluated by an ILADS (International Lyme and Associated Diseases Society) doctor. You also need to be evaluated for all the co-infections ticks can transmit.
If you need doctor recommendations, you can post in the "Seeking A Doctor" forum.
Posts: 4681 | Registered: Oct 2000
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quote:Originally posted by seeking: Thanks both of you. But he thought 41 before and now he doesn't? I still have the indeterminate 34 but it's not a positive.
"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."
In other words, band 41 ALONE would not make him think you had Lyme. (in his 2005 info)
If you have two, that is a different story. Too bad you didn't do an antibiotic challenge prior to the test. Might have helped.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Thanks. I happened to take antibiotics before the Igenex blood draw, but probably not the right ones or amounts. Only for a week. I had some new infection and was on levofloxacin and maybe a different one too.
-------------------- Sick since childhood, a long time ago. Posts: 15 | From Midwest | Registered: Mar 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Many ILADS doctors diagnose clinically. Best to find a good LLMD who can/will do a clinical evaluation since the tests are notoriously inaccurate.
You can get recommendations from other patients in the seeking a doctor section of this website.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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My "diagnosis" for 20+ years was fibromyalgia. When I came in positive for Lyme, I tried to find as many of my old fibro friends as I could. Those I could find had found out by then they had Lyme disease, and some had co-infections.
The film, "Under Our Skin," features many who say their initial diagnosis was fibromyalgia, which is not a diagnosis - it's a syndrome about pain in the muscles.
The bacteria mess up our nerves early on, and can corkscrew into tissues anywhere, thus inflaming us bodywide.
I had a sudden happy response to taking oral clindamycin, which I knew I could take - we're all different when it comes to which treatments will work for us.
I put myself on 150mg clinda around the clock, just as I'd been asked to do for a finger infection, only I didn't stop taking the med. Within a week's time, no more pain!!
I kept going, I herxed in a month's time, then dropped back to 2x/day.
The trick will be finding the treatments that work for you.
Posts: 13117 | From San Francisco | Registered: May 2006
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