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How To Read A Lyme Disease Panel


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14 replies to this topic

#1 Marilyn R

 
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Posted 26 March 2012 - 06:43 PM

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?
  • 1
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

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#2 AVR1962

 
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Posted 26 March 2012 - 09:03 PM

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.
  • 0
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#3 Bubba's Mom

 
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Posted 27 March 2012 - 07:14 AM

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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#4 Skylark

 
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Posted 27 March 2012 - 09:48 AM

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/l...ep/WesternBlot/
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#5 Marilyn R

 
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Posted 27 March 2012 - 02:06 PM

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?
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#6 Marilyn R

 
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Posted 27 March 2012 - 02:44 PM

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".
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#7 Marilyn R

 
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Posted 27 March 2012 - 02:55 PM

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/l...ep/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.
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#8 alicewa

 
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Posted 27 March 2012 - 03:04 PM

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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#9 mushroom

 
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Posted 27 March 2012 - 05:00 PM

There is a whole thread on lyme disease here on the forum at http://www.celiac.co...disease-thread/ for those interested.
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#10 AVR1962

 
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Posted 28 March 2012 - 12:18 AM

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.
  • 0
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#11 ravenwoodglass

 
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Posted 28 March 2012 - 04:12 AM

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.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#12 Skylark

 
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Posted 28 March 2012 - 07:14 AM

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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#13 Marilyn R

 
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Posted 28 March 2012 - 05:36 PM

There is a whole thread on lyme disease here on the forum at http://www.celiac.co...disease-thread/ 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.
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#14 ravenwoodglass

 
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Posted 29 March 2012 - 04:50 AM

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.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#15 Marilyn R

 
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Posted 29 March 2012 - 03:21 PM

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.
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.




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