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How To Read A Lyme Disease Panel
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So my saga begins with my neurologist suggesting a Lyme Disease panel. I told her I didn't think that was pertinent, (I live in the deep South) but consented to the blood draw. Nobody called me after the test results, and I wasn't concerned, so I didn't call. (Old news for anyone who followed stupid doctor thread.)

Four months later, when I was following up with my PCP, she poked on the wrong box on her computer screen and told me I may have Lyme Disease, she'd call the Neurologist and if I needed to do anything, I'd get a phone call.

The neurologist reported a case of Lyme Disease to the Community Health Dept. 4 months ago (me), but didn't notify me. PCP's medical assistant called to tell me to pick up an rx for antibiotics and see the Infectious Disease specialisit. I didn't pick up the rx.

It took a few weeks to get an appointment with the specialist, and I had to jump through a few hoops just to get the appointment.

He was great, had a cracker jack sense of humor. He questioned me intensively about any possible tick exposure. He said in his opinion,, I had about as much liklihood of Lyme disease as I had in winning the lottery.

On the Lyme Disease panel, the last two lines are:

Lyme Disease AB (IGG) WB - for me that was negative negative

Lyme Diseased AB (IGM) WB - positive negative

The Infectious Disease Dr. explained that the IGM is short-term memory, IGG is long term memory for antibodies. He'd be more worried about me having Lyme disease if I was IGG positive.

He wrote me an rx to repeat the bloodwork and told me it was my choice as to if I wanted to see him again. He said I could schedule and cancel, or call to set an appointment if I wanted to get treated in the very unlikely case that I have it after all.

Those bugger antibodies have memories! Isn't that fascinating?

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So my saga begins with my neurologist suggesting a Lyme Disease panel. I told her I didn't think that was pertinent, (I live in the deep South) but consented to the blood draw. Nobody called me after the test results, and I wasn't concerned, so I didn't call. (Old news for anyone who followed stupid doctor thread.)

Four months later, when I was following up with my PCP, she poked on the wrong box on her computer screen and told me I may have Lyme Disease, she'd call the Neurologist and if I needed to do anything, I'd get a phone call.

The neurologist reported a case of Lyme Disease to the Community Health Dept. 4 months ago (me), but didn't notify me. PCP's medical assistant called to tell me to pick up an rx for antibiotics and see the Infectious Disease specialisit. I didn't pick up the rx.

It took a few weeks to get an appointment with the specialist, and I had to jump through a few hoops just to get the appointment.

He was great, had a cracker jack sense of humor. He questioned me intensively about any possible tick exposure. He said in his opinion,, I had about as much liklihood of Lyme disease as I had in winning the lottery.

On the Lyme Disease panel, the last two lines are:

Lyme Disease AB (IGG) WB - for me that was negative negative

Lyme Diseased AB (IGM) WB - positive negative

The Infectious Disease Dr. explained that the IGM is short-term memory, IGG is long term memory for antibodies. He'd be more worried about me having Lyme disease if I was IGG positive.

He wrote me an rx to repeat the bloodwork and told me it was my choice as to if I wanted to see him again. He said I could schedule and cancel, or call to set an appointment if I wanted to get treated in the very unlikely case that I have it after all.

Those bugger antibodies have memories! Isn't that fascinating?

Can't help with the lab results but let us know if you find out anything. I was just tested for Lyme disease last week, second test in a year.

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I'd still be curious why the antibodies tested positive? If the long term "memory" didn't show positive, wouldn't it mean that you hadn't had Lyme disease for a long time, not that you don't have it?

It's all very interesting. I wonder if the Lyme antibodies read similar to gluten ones?

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Can't help with the lab results but let us know if you find out anything. I was just tested for Lyme disease last week, second test in a year.

My girlfriend with severe Rheumatoid Arthritis says her rheumy checks her for Lyme disease once a year. Did different doctors order the Lyme disease panel or are you getting a re-check too?

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I'd still be curious why the antibodies tested positive? If the long term "memory" didn't show positive, wouldn't it mean that you hadn't had Lyme disease for a long time, not that you don't have it?

It's all very interesting. I wonder if the Lyme antibodies read similar to gluten ones?

I researched that test after the PCP called me. I don't recall the source, but I read that false positives are not uncommon if you have high levels of antibodies, an auto immune disease or are older. That's why I didn't pick up the antibiotics.

The long term memory was significant to my I.D. doc because I did not travel at all in 2009 or 2010, went to Michigan twice in 2011, but both times in the winter. (He asked me if that was a deer state.)

Lyme Disease is virtually non-existant where we live and the odds are extremely in favor of a false positive. He asked about symptoms but could attribute all of them to my other 2 AI diseases. He asked quite a few questions about cardiac symptoms (none) before writing the lab draw. He was specific about which lab to go to, didn't like the one I'd had my labs drawn at. He gave me a choice of two. I cracked up and told him he just told me not to go to the lab at the doctor's office that had referred me to him.

He cracked up and responded "professional courtesy".

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The CDC has some info that says IgM is more likely to be false positive, and you shouldn't rely on it if you were sick for more than 4-6 weeks when the test was done.

http://www.cdc.gov/lyme/diagnosistreatment/LabTest/TwoStep/WesternBlot/

Wow that link was really helpful Skylark. I only had two panels that tested positive. CDC says you have to have 5 or more. The tx is anti-biotics, and that's not good for Lupus. Thanks again.

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Lyme disease is apparently ridiculously common and can manifest itself as MS, Rheumatoid Arthritis and other autoimmune diseases. May be present in up to 1 in 15 people. Jason just uploaded a factual video on this (I think it was recently) which I thought you'd like to see:

I think Dr Wise made a special formula for Lyme called Cat's Claw.

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There is a whole thread on lyme disease here on the forum at for those interested.

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My girlfriend with severe Rheumatoid Arthritis says her rheumy checks her for Lyme disease once a year. Did different doctors order the Lyme disease panel or are you getting a re-check too?

The rhuematory arthritis bloodwork was ordered by the same doc that ordered my lyme disease testing. The lyme disease is one I have been tested for previously.

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I think Dr Wise made a special formula for Lyme called Cat's Claw.

Cat's Claw is a South American herb that has been in use for a very long time. If I remember correctly it helps with inflammation. I took it for quite a while prediagnosis. I have never heard of it being used with Lyme but I am not real knowledgeable about Lyme treatments.

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Wow that link was really helpful Skylark. I only had two panels that tested positive. CDC says you have to have 5 or more. The tx is anti-biotics, and that's not good for Lupus. Thanks again.

CDC has some really good stuff on the Internet these days. I'm glad you won't need to go onto antibiotics with your Lupus!

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There is a whole thread on lyme disease here on the forum at for those interested.

Thanks,mushroom! Somebody who posted earlier sent me two PM's about how great she felt after having a doctor's (featured on the video) special progam. I considered the messages spam, and really appreciate the good advice from trusted posters. (She told me I could start eating gluten again if I'd follow his program and vitamins.) Message to person who sent spam: go away, not interested, and I think you're using the forum incorrectly. Abusive is the word that comes to mind. I won't mention the other ones, because I can have a foul mouth occasionaly.

Thanks again 'shroom.

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Thanks,mushroom! Somebody who posted earlier sent me two PM's about how great she felt after having a doctor's (featured on the video) special progam. I considered the messages spam, and really appreciate the good advice from trusted posters. (She told me I could start eating gluten again if I'd follow his program and vitamins.) Message to person who sent spam: go away, not interested, and I think you're using the forum incorrectly. Abusive is the word that comes to mind. I won't mention the other ones, because I can have a foul mouth occasionaly.

Thanks again 'shroom.

Please do report this person to the mods if they continue to spam you. They may be contacting other new members who could be harmed by this advice.

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Please do report this person to the mods if they continue to spam you. They may be contacting other new members who could be harmed by this advice.

Will do, thanks for the important reminder.

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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