Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

How To Read A Lyme Disease Panel
0

15 posts in this topic

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

Share this post


Link to post
Share on other sites


Ads by Google:

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

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites




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

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,678
    • Total Posts
      921,699
  • Topics

  • Posts

    • First of all, welcome to the forum! it's good to have you here. Secondly, I can really relate to the fatigue portion.  it really hadn't affected me until everything hit the ceiling medically for me.  I was constantly tired all the time, and waking feeling rested in the morning. Prone to depression and anxiety, definitely.  It drove me nuts for those first few weeks.  That's when I decided to try going off the gluten to see what happened.  I still dealt with the depression, anxiety at crazy levels, and inability to focus/concentrate, but it had gotten progressively better.  The anxiety got so bad I would have panic attacks in public areas which only ramped up the anxiety because people saw what was happening.  I would encourage you and your doctor to do a full Celiac panel before you decide to try the gluten free diet.  I had my blood work done after I was off gluten for about two months or so.  Thankfully, my levels were still high to register at least a gluten sensitivity.  Since going off gluten for almost a year now, things have started to finally appear "normal".  Whatever normal means for me now.  As I am healing from the 30 years of glutenizing, I combined both natural methods with the medical methods.  If you are interested in the different avenues of natural methods, I would be willing to share with you.  I will be praying for you as you go through this journey. Let me assure you, you are not alone in this journey.  Depending on family dynamics, they can be a great source of support.  This forum is also a great place to bounce thoughts or concerns off of.  Good luck.
    • I doubt it. I would think that would be a questions for the company that make them.    But if smoking makes you feel bad....and you are able to quit for several weeks at a time....why go back to it?
    • Hi. I've noticed that after a break of smoking (2-3 weeks) I feel bad, when I begin to smoke again.  Maybe they contain some additives with gluten??
    • Thank you everyone! Good to know I am not alone with this. I am asking for a referral to a new cardio. Hopefully it will all go away the longer I am gluten-free. It started up in February/March after a gluten challenge and mostly vanished until July when I had a lot of shortness of breath. It absolutely was CRAZY just a few days after the glutening. I was gasping for breath and the beats were all over the place just walking through a parking garage and I was only mildy anemic at the time.   But it seems to "quiver" and do funny things for a bit still. I sort of theorized maybe it was inflammation in the heart because after this last glutening, my head felt like it was in a vice and my eyes would sting or get stabbing pain hurt (that is finally going away thankfully...knock on wood).  The head/eye pressure I learned also happens to my sibling who has celiac and his naturopath told him that sometimes the brain gets inflamed. Hopefully I can meet the new cardio soon and feel confident that he is taking me seriously. It is sort of difficult to feel confident in the opinion of a doctor that your ticker is ok when they are not really listening and end up making you cry. LOL. A friend of mine in the mental health field recently listened to my story of doc after doc and test after test and said that it was akin to the folk story of blind men describing an elephant. A group of blind men all feel one part of an elephant (tusk, tail, ear, tail) and then compare notes only to find they all disagree.  In some  versions they argue intensely. In other versions they have to collaborate and listen to each other in order to "describe" an elephant.    
    • Good afternoon! I am new to this board and fairly new to researching Celiac Disease, although I had a general idea what it was. My health has become a huge mystery to me, and it's one that I am desperate to solve. The biggest issue right now is horrible, life affecting fatigue. I have been dealing with it for several years now- as many as 5 to 6. It has gotten progressively worse, and nothing at all helps. Sleep apnea has been ruled out. Intestinal issues are something I have dealt with for almost two decades. I'm 45, but I've already had two colonoscopies as well as two endoscopies. My first endoscopy was as a child for persistent, severe stomach pain. My last colonoscopy and endoscopy was two years ago. The only thing that has come from those is an Irritable Bowel type condition and GERD, which is pretty bad. My bowel movements have always been crazy. They can be very normal and healthy to completely crazy. I've had periods of persistent diarrhea to occasional constipation, which is a fairly new thing within the last year. Last week, I went from having diarrhea that morning to hard, round balls of stool by that evening. My most common stools here lately, though, are not quite diarrhea, but more fluffy, large piles. Gas is an ongoing, daily issue for me. I have copious amounts of gas every day no matter what I eat or drink. Most of the gas in non-odorous but it can be very loud. I am currently on a total of 60 mg of Ritalin per day just to function. I often add energy pills, purchased from places such as GNC, because the Ritalin isn't working. Yesterday, I took both doses of Ritalin and two energy pills, and I passed out on the couch after work. I work from 7:30am to 3:30pm, and my work day is nothing too crazy. I try to keep very consistent sleep hours and could easily sleep to 1:00pm or longer if I don't have to get up for something. I sometimes have short periods of energy in the mornings, but that is usually over by noon. The quality of my life is greatly affected. I don't want to go anywhere or do anything because I am way too tired. I'm trying to keep up with my exercising, but that is also a struggle.  I have a history of clinical depression for practically all my adulthood, but it has been very well managed for the last four years. The fatigue is currently causing a great deal of depression, but it is very different from the clinical depression that I use to deal with. When I don't feel sleepy and tired, I don't feel depressed. When the fatigue sets in, I feel very irritable and sad. I realize that the stimulants can cause irritability, but I don't feel irritable or sad when I'm not feeling fatigued.  I've only recently began to explore that the fatigue and the intestinal issues could be related. I have always accepted that I have a sensitive, cooky digestive track. The increasing, unrelenting fatigue is what has lead me to exploring the possibility that everything could be related. I did have blood work last November. My doctor did not test for anything Celiac Disease specific, but she did do a Vitamin D, ferritin level and overall metabolic panel. All of that is normal. My thyroid level is also normal, and I do take thyroid hormone because I had half of my thyroid removed 11 years ago due to what turned out to be a benign thyroid tumor.  I just saw my doctor two weeks ago, and she increased the dosage of my Ritalin. That has not helped at all. She has never mentioned Celiac Disease to me before. I made an appointment for this Friday afternoon to talk about it, but I keep wondering if I'm even heading in a direction that makes sense. I decided to post here for some guidance. I'm sorry this has been so long. I'm not really into cutting something totally out of my diet just to see what happens. I also feel like that if I have something that is poisoning my system, I need a real clinical diagnosis of that. I feel like maybe I'm grasping at straws now and imagining a correlation that isn't there. I am not looking for a quick fix, but right now I have no idea what needs to be fixed. I am open to any information and/or suggestions. Thanks so much!   Jennifer
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,674
    • Most Online
      3,093

    Newest Member
    Miss_G
    Joined