posted
I am too tired to read through things myself right now and want a couple quick answers:
My daughter was diagnosed with lyme in June (the 15th) via positive IgG and IgM and then CDC positive Western Blot from Mayo labs even. Bell's palsy, fever, muscle aches
Retested last week and she is still positive IgG and IgM and her western blot is still CDC positive for IGM.
1st WB results:
IgG 39, 41
IgM 23, 39, 41
2nd WB results:
IgG 41
IgM 39, 41
So the WB has changed a bit. What do the ISDA guidelines say about determining active infection? I know we think they are nuts but assuming my pedi is going to go by that I am curious. She does not appear to have active symptoms. How does an ILADS physician determine active infection in someone without symptoms?
Posts: 207 | From NH | Registered: Jul 2009
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posted
PS again. she was treated with amoxicillin enough even according to Dr. B's guidelines
Posts: 207 | From NH | Registered: Jul 2009
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posted
Unfortunately these test results have little meaning. They suggest that your daughter had lyme and was treated before eliciting a strong IgG response (usually the later antibody response). However, these tests are poor and inaccurate. The fact that she still has an IgM response COULD mean that she is still actively infected or that simply those antibodies are still lingering in her body from being infected in June.
I suspect I'm only confusing things. Essentially, treat based on symptoms and try not to put to much value in the test results. You at least knew she had lyme and that's about all you can take away....
Posts: 561 | From mass | Registered: Jul 2007
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posted
It is really hard to live with that. She appears healthy but every time she gets sick or has a symptom I don't want to have to wonder about lyme. what if she gets b iten by a new tick?
Posts: 207 | From NH | Registered: Jul 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Have you thought about a maintainance dose? If this bug truly acts like syphilis I would want one. But I don't know what LLMD's like to do about that problem.
-------------------- 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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posted
I read recently that if the test becomes less positive, it means the infection is getting better.
You could consider rife or homeopathics or herbs, and the diet (sugar lowers the immune system very mcuh, for example, and many people can cope with any remaining borrelia bacteriae just with their immune system, so it is important to eat right etc) I think rifing is cheap and it does not involve antibiotics. Probiotics are important for the immune system too, the antibiotics have killed off all the good bacteriae and now she needs all the good ones back. Maybe going gluten-free and sugar-free is worth considering. (read about diet and supplemets in burrascano's guidelines)
Posts: 366 | From Europe | Registered: Nov 2008
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posted
Test are meaningless at this point. All treatment should be based on length of time she had symptoms and if she still has synptoms. Rule of thumb is from 1st date of illness count the months and take that number of months of abx and add one or two after the symptoms have disappeared completely.
Lyme has a way of hidding from treatment and can come back. Be sure your treatment included several forms of abx as spelled out in Dr. B guidlines.
I don't believe 30 days of abx will cure lyme that you've had for 60 days and the doctors that say the symptoms that reappear are only your immune system responding, are wrong.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Lyme is a clinical diagnosis!!!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I would treat until your daughter remains symptom free
For at least 3-4 months.
I have two young children (congenital Lyme) who treated until that point.
Both off antibiotics and both doing well other than the flu.
The Western Blot is an antibody test.
My LLMD believes that often the very sickest people with Lyme
Are the ones with the least amount of positive bands.
Testing is not an indicator of whether the disease has
Been erradicated......or not.
You may produce antibodies your whole life and not be symptomatic.
You may also have minimal positive bands and be very ill.
I don't think testing is a good indicator of wellness.
How does your daughter feel?
As for the worry about every cough, sneeze, ache and pain...
It goes on and on. Just like worrying about another tick bite.
Unfortunately just part of our reality as ones who now know
More about Lyme disease than most people in this world.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I think what I am trying to understand is how would a IDSA MD explain this so that I can try to understand what view point my physician may take and then being able to have other research as neeed.
Does the IDSA really believe that whether you have had lyme for a week or 6 months you still require the same amount of antibiotics?
Posts: 207 | From NH | Registered: Jul 2009
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Yes the IDSA believes in the "28" day cure whether
You were just bitten or had Lyme for years.
Sigh.
Is your daughter seeing a LLMD?
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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