Lyme test confusion

[joy4ever97]

My mom was visiting us in Northeast form China. She developed a circular rash and fever in late June 2009. Doctor suspected ehrlichiosis, prescribed 30-day doxycycline. My mom also did lyme test right after the rash and fever, that came back negative. After just a few days doxycycline treatment, she does not have any symptom. Then in October, I want to make sure, she did a lyme test again although she does not have any symptom, but that came back positive.

LYME IGM positive
23KD IGM BD Reactive
39K IGM BD Reactive
41KD IGM BD Reactive

LYME IGG negative
18KD IGG BD Comment: Nonreactive
23KD IGG BD Reactive
28KD IGG BD Comment: Nonreactive
30KD IGG BD Comment: Nonreactive
39KD IGG BD Comment: Nonreactive
41KD IGG BD Reactive
45KD IGG BD Comment: Nonreactive
58KD IGG BD Comment: Nonreactive
66KD IGG BD Reactive
93KD IGG BD Comment: Nonreactive


Now I am very confused with the results. Just before we did the 2nd lyme test, one doctor questioned whether there is any point in doing the test, he said my mom does not have any symptom now and the test can come back false positive, and he is not going to treat her even the test is positive because she does not have any symptom. But when I got the call from the doctors office, it was a different doctor, he was saying the fact the 1st test in June was negative while the 2nd test in October was postive can mean she got another tick bite in between June and October, therefore even though she does not have symptoms, she has to be treated with doxycycline. When I consulted a 3rd doctor which is an infection doctor, he said the test was testing antibodies, based on her 2nd test, she had a lyme infection back then in June, she developed antibodies because of the bite in June, and the antibodies can be high for months or years, that is why the 2nd test came back positive. But he also said he can not rule out a 2nd bite in between June and October, but she does not symptom, then that does not need a treatment.

Can you please help clearing my confusion? Is there any risk not doing anything. She is going back to China, I am afraid if something comes up later, she'll be difficult to get treatment.

Thank you.

[JackieCalifornia]

I am not medically trained, but I do not disagree with your concern about your mother's situation.  Lyme diagnosis and treatment is an area of significant argument among MDs, so it is too bad (but not surprising) that you are hearing different things from different doctors.

Lyme tests are not very accurate, but they are all we have, along with a careful review of symptoms, by an experienced MD.  

Did your mother take all 30 days of the doxycycline?  If she did, that is good, because taking only a few days is too short to be sure it is curing what she has/had.  I understand that doxy is effective against Lyme and against Ehrlichiosis, because it is what I was diagnosed with and what I was prescribed.  Some MDs prescribe for a longer time than 30 days, but the sooner after the infection that treatment is given, the easier it is to cure; it is a judgment call by the MD.

You say that her October test came back positive, although her earlier June test was negative.  This is not unusual, because it takes time after the bite for the body to begin to make antibodies against the Lyme and other bacteria, and the tests measure for antibodies.

You should request copies of all test results, because as you report the tests above, it is not as detailed as it could be:  there are many shades of gray in Lyme testing, and it is not a simple black-or-white 'yes you have it' or 'no you don't have it.'  Which lab processed the Lyme test?  Igenex is a lab that Lyme doctors often use, because it gives results that respect the 'shades of gray' aspect of testing, by listing the 'bands' [which is what those numbers are called] with either negative or indefinite or +, ++, +++ or ++++, indicating increasingly high levels of reaction and therefore likely infection.

The different bands have different meaning as well.  IgM measures the immune reaction that happens relatively soon after infection; IgG is somewhat later in the infection.

LYME IGM positive
23KD IGM BD Reactive -- this band is specific for Lyme, meaning no other bacterium causes a positive reaction on this part of this test
39K IGM BD Reactive -- this band is also specific for Lyme
41KD IGM BD Reactive -- this band can mean any spiral-shaped bacterium, which includes Lyme but also other spirochetes.

LYME IGG negative
18KD IGG BD Comment: Nonreactive -- highly specific to Lyme
23KD IGG BD Reactive -- specific to Lyme
28KD IGG BD Comment: Nonreactive -- unknown
30KD IGG BD Comment: Nonreactive -- unknown
39KD IGG BD Comment: Nonreactive -- specific for Lyme
41KD IGG BD Reactive -- can be any spiral shaped bacterium; usually the first band to show up in tests after infection; this may indicate the recent nature of your mother's infection
45KD IGG BD Comment: Nonreactive -- not specific to Lyme
58KD IGG BD Comment: Nonreactive -- unknown, but may indicate Lyme
66KD IGG BD Reactive -- not specific to Lyme
93KD IGG BD Comment: Nonreactive -- might indicate Lyme

The fact that your mother's tests show her more positive on the earlier IgM test may be consistent with a recent infection.  

It sounds like you have three different doctors with three different opinions, which is unfortunately not unusual when it comes to Lyme.  I would suggest that your try hard to get your mother in to see the second doctor again before she leaves, because he sounds the most broadmined about treating Lyme aggressively.  

The third MD, the infectious disease doctor, appears to take the point of view held by the Infectious Disease Society of America (IDSA), which has a policy of stating that Lyme is not a big deal; the second MD sounds like he takes a more progressive view of treatment, in order to be sure your mother is fully treated.  This is an area of great dispute in the US and Europe; I do not know if Lyme is found in China, so I encourage you to follow up as you have been, before she leaves.  It is what I would do in your situation.

Let us know how she does.  Best wishes --

[joy4ever97]

Thank you very much.

She was prescribed a 28-day prescription and she finished all. Her test was done at Quest diagnostics, I went to the hospital to get all the results, All I got are those with "postive", "reactive" "non-reactive", "negative" terms.

You say the postive IgM and negative IgG may be consistent with a recent infection, could that mean another tick bite after June's tick bite?

[JackieCalifornia]

I don't know enough about testing to answer your question specifically, but I suspect that there are no absolute cut-offs for when IgM and IgG time frames begin and end, and it may be different in different people.

The ticks are so tiny that they are very hard to see, and many people never see the -- I didn't see the first tick that bit me.

I think Igenex labs is the place that gives the +, ++, etc. results.  Perhaps you can persuade your MD to order tests through Igenex, if you think it would be of value.  

[joy4ever97]

Earlier this year I posted a question on my mom's tick bite in 2009 and the test result confusion. She got a tick bite again this year, although the tick is probably in an earlier stage when I took it down from her back. I was told by some doctor  that since she had tick bite last year and developed symptom that time, she probably had lyme that time and then her lyme test will remain positive for maybe years. So that doctor said we should see if she has any symptom, otherwise don't even do the lyme test. So far we don't see any obvious symptom. But I am so worried about the recent bite, so I took her to the test, the result is:

LYME IGM positive
23KD IGM BD Reactive
39K IGM BD Reactive
41KD IGM BD Reactive

LYME IGG negative
18KD IGG BD Nonreactive
23KD IGG BD Reactive
28KD IGG BD Nonreactive
30KD IGG BD Nonreactive
39KD IGG BD Nonreactive
41KD IGG BD Nonreactive
45KD IGG BD Nonreactive
58KD IGG BD Nonreactive
66KD IGG BD Nonreactive
93KD IGG BD Nonreactive

Lyme disease screen 2.05   (last year was > 5)      Index valu 0.00-0.90


So similar to her lyme test last year, the IgM 3 bands stay positive, her IgG 41KD and 66KD has changed from last year's reactive to this time's reactive. But the doctor who prescribed this lyme testing still think the positve IgM should indicate recent infection.

Anybody has suggestions? Is that really if somebody had lyme, his lyme test will stay positive for years?

Thanks.

[JackieCalifornia]

These are all good questions, and I would encourage you to keep asking the doctor questions.  Again, please remember that no one here is medically trained, so you can't rely on us.

It is my understanding that the IgM is where the first positive reactions would be seen in a Lyme infection, and then as time passes, the IgG would show positive reaction and the IgM reaction fades.  I don't know how long it takes for that to occur, and it may well be different in each person.  *I'm not medically trained!*

Therefore if your mother is showing more of the 'early' IgM and less of the 'late' IgG, I would be asking the MD why that is.  If I have my understanding correct of the progression from IgM to IgG, then she may have a new infection and need treatment again.  

==>>  HOWEVER the reliability of IgM and IgG testing in order to determine recent vs older infections is questioned in some medical studies.

Lyme is a very tricky disease, and the tests are far from accurate, so having a good MD is even more important.  Sorry not to be more helpful, but these are good questions and should be asked of the MD.  

If it were me, I'd probably opt to be treated with antibiotics just in case, but that's a personal judgment call.

Let us know what you do and how your mother is, okay?

[joy4ever97]

Thank you so much for your comments. I am a little bit leaning towards to taking the antibiotics this time. So I have read somewhere doxycycline is effective for early stages. Does that mean doxycycline is effective as long as the patient did not develop chronic symptoms?

[JackieCalifornia]

Doxycycline ("doxy") is often used to treat Lyme and other tickborne illness.  It was prescribed for me, but due to some other problems, I have not tried it.  It can be hard on some people's digestive systems, but that doesn't happen to everyone, and I think it's considered one of the more effective treatments.

I don't think it matters whether the infection is new or not; doxy is still effective if tolerated, so I have read.  Another good question for your MD.

[joy4ever97]

So my mom has been taking the doxycycline for about a week now, the first 3-4 days she took it in the US before she went back to China. And after continuously taking it for one day in China. She developped a kind of very itchy spotty red rash, symmetrically along the side part of the arms and legs until feet. She had a full course (28 days) doxycycline last year in the US with no problem, and even this time, the first 3-4 days in the US were no reaction. I don't know what to do: stopping doxycycline is risky right if she was newly infected? But continue taking it - I don't know it is right either. Anybody has similar reaction to doxycycline? Anybody has suggestions?

[JackieCalifornia]

from Drugs.com website:

Doxycycline side effects

Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.

Stop using doxycycline and call your doctor at once if you have any of these serious side effects:
--severe headache, dizziness, blurred vision;
--fever, chills, body aches, flu symptoms;
--severe blistering, peeling, and red skin rash;
--urinating less than usual or not at all;
--pale or yellowed skin, dark colored urine, fever, confusion or weakness;
--severe pain in your upper stomach spreading to your back, nausea and vomiting, fast heart rate;
--loss of appetite, jaundice (yellowing of the skin or eyes); or
--easy bruising or bleeding, unusual weakness.

Less serious doxycycline side effects may include:  swollen tongue, trouble swallowing; mild nausea, vomiting, diarrhea, or stomach upset; white patches or sores inside your mouth or on your lips; sores or swelling in your rectal or genital area; or vaginal itching or discharge.

This is not a complete list of side effects and others may occur.

Before taking doxycycline, tell your doctor if you are taking any of the following drugs:
    * cholesterol-lowering medications such as cholestyramine (Prevalite, Questran) or colestipol (Colestid);
    * isotretinoin (Accutane);
    * tretinoin (Renova, Retin-A, Vesanoid);
    * an antacid such as Tums, Rolaids, Milk of Magnesia, Maalox, and others;
    * a product that contains bismuth subsalicylate such as Pepto-Bismol;
    * minerals such as iron, zinc, calcium, magnesium, and over-the-counter vitamin and mineral supplements;
    * a blood thinner such as warfarin (Coumadin); or
    * a penicillin antibiotic such as amoxicillin (Amoxil, Trimox, others), penicillin (BeePen-VK, Pen-Vee K, Veetids, others), dicloxacillin (Dynapen), oxacillin (Bactocill), and others.

This list is not complete and there may be other drugs that can interact with doxycycline. Tell your doctor about all the prescription and over-the-counter medications you use. This includes vitamins, minerals, herbal products, and drugs prescribed by other doctors. Do not start using a new medication without telling your doctor.
===================
I think I"ve also read that doxy causes sun sensitivity on skin, so if your mother has been getting sun exposure, that could account for the rash perhaps, but I'm not medically trained.

I also read just now that you can have a reaction to doxy even if you took it before and had no problems.

If she got the prescription here in the US, can you set up a web link like skype to let her MD here see and talk with her?  Don't know if the doc would go for that, but why not try?

Hope she gets better soon -- let us know how she does.  

[joy4ever97]

Thank you very much.

My mom went to see a doctor in China, the doctor does not think the rash is a reaction from taking doxycycline, she think it was from some bug bites and prescribed a different medicine, that seems to fix the rash problem. Now my question is: because of this rash problem and we were not sure whether it is a reaction from doxycycline, she stopped taking doxycycline for about a week, is it good idea to continue to finish the rest (she's got probably another 10 days doxycycline to finish from a 21-day total)?

Thanks much again.

[JackieCalifornia]

I am glad your mother is better!  I'm not medically trained and can't advise on whether to resume the medication.  Can you contact the MD who prescribed it, describe the problem that occurred and how it was dealt with, and then ask if the doxy should be finished?  That is what I would do in your situation.  Sorry not to be of more help.