posted
2 months ago I was diagnosed with Lyme after many years of suffering. My ElA was positive for both igg and igm and WB was positive with 41 and 23.
I was on antibiotics for a couple weeks, not a LLD. I just got retested and both ElA still positive but WB negative with only 41 still present on both Igg WB and IGM WB. I know 41 is significant...if I got rid of the lyme why is 41 still present?
Please, I need you advice ASAP as I go back to Dr. this week and I still feel crappy. Should I retest?
Thank You Alex
Posts: 13 | From nj | Registered: Mar 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Alex, from what I have understood from patients
here it can take many test before you get a
positive. Our immune systems are shut off from
being able to perceive the invader and as such
will show neg. While Elisa is usually neg. or IND
also I would go to a LLMD and let them help you
get what you need. I would not waste money on a
Dr. that was not. Did you wait 2 weeks after
antibiotics for draw? 41kDa means flagella so it
is possible that you have some other bacteria
that contains flagella but if Elisa says pos. I
would still go with Bb. Also if this test was not
done by a Lyme specific lab I would expect a bad
showing on WB. This is sadly the norm today. My
first test was Elisa neg. with one band migrating
in the IgG region unable to identify-not a lyme specific lab. And this
was when I first felt I contracted Lyme or
something 07. Then in Jan this year after 3
months of a treatment of sorts I got a positive
from Igenex IgM. Now in treatment for
neuroborreliosis. And I am getting better.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Welcome to lymenet!
2 weeks of treatment is not enough to get rid of lyme disease, especially if you've had it for many years.
Standard IDSA (Infectious Disease Society of America) treatment is not long enough or strong enough to deal with lyme disease. Most doctors who are not members of ILADS (International Lyme and Associated Diseases Society) use the IDSA guidelines.
Test results can vary from one test to the next for many reasons, one being antigenic variability. Functioning of the immune system can vary and sometimes actually goes down with antibiotic treatment. This means that one test can be positive and the next negative or vice-versa. The tests are not very accurate or reliable.
For this reason and others, there are battles going on regarding the diagnosis and treatment of lyme disease. Many who end up at lymenet with chronic lyme disease are the result of the IDSA guidelines.
The Attorney General of Conneticut found that the IDSA guideline authors had conflicts of interest and thus the IDSA has convened a new panel to review the guidelines and hopefully they will make adequate changes.
One can also get what we call co-infections from the tick that passes lyme. Some of these infections require an entirely different treatment than lyme disease. It is not unusual to have a co-infection and if you do, it is much more difficult to get rid of lyme.
Your best course of action in my non professional opinion is to seek out and ILADS LLMD. Most have extensive training in TBI's (Tick Borne Illnesses) and can give you proper testing and clinical evaluation for lyme disease and co-infections. Testing for most of these pathogens is poor at best.
ILADS is a group of physicians who specialize in treating chronic lyme disease. You will often hear them referred to as LLMD's (Lyme Literate Medical Doctors) http://www.ilads.org/
You can go here and register and get a list of ILADS doctors that are closest to you. http://tinyurl.com/6na364
A great book that you can read that helps to understand the situation with lyme disease is "Cure Unknown". Written by a Science Journalist who is senior editor for Discover Magazine. She and her whole family faced lyme disease. The book covers a lot, history, science and her personal story and a few others personal stories.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Thank you both for the responses. Does the fact that flagellum is still present mean the bacteria is still there?
Thanks
Posts: 13 | From nj | Registered: Mar 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
If you're saying that you were sick for two years and only had two weeks of abx just recently, you need to find yourself a lyme literate md (LLMD).
You already had one positive test so forget about the testing for now. What are your current symptoms?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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quote:Originally posted by anandinidd: [QB] Thank you both for the responses. Does the fact that flagellum is still present mean the bacteria is still there?
Most likely.
Which lab are you using? You may have many more bands show up if you use Igenex Lab. That would give you a better picture of your status.
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