Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How To Read A Lyme Disease Panel


Marilyn R

Recommended Posts

Marilyn R Community Regular

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

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.

Bubba's Mom Enthusiast

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?

Skylark Collaborator

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.

Open Original Shared Link

Marilyn R Community Regular

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?

Marilyn R Community Regular

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".

Marilyn R Community Regular

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.

Open Original Shared Link

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



alicewa Contributor

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.

mushroom Proficient

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

AVR1962 Collaborator

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.

ravenwoodglass Mentor

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.

Skylark Collaborator

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!

Marilyn R Community Regular

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.

ravenwoodglass Mentor

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.

Marilyn R Community Regular

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    2. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    5. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,158
    • Most Online (within 30 mins)
      7,748

    MollyK
    Newest Member
    MollyK
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.