Exploring the Great Mimicker: Lyme Disease with Dr. Casey Kelley

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In this episode of The Functional Medicine Radio Show, Dr. Carri’s special guest Dr. Casey Kelley explains how you can detect and treat Lyme Disease.

Dr. Kelley is a Board Certified Family Practice doctor and a Diplomat of the American Board of Integrative Holistic Medicine. She is a founding member of the Academy of Integrative Health and Medicine, and also a member of The Institute of Functional Medicine and The International Lyme and Associated Diseases Society. She sees patients at WholeHealth Chicago – one of the Midwest’s oldest and most respected Integrative Medicine clinics.

Main Questions Asked:

  • How common is Lyme Disease? How many people are not being diagnosed properly?
  • Where are the real “hot spots” for Lyme ticks?
  • What are the signs and symptoms of Lyme Disease? How would we know to ask our doctor to be tested?
  • What are the traditional and non-traditional tests for detecting Lyme?
  • How can all of these tests come back as normal but we could still have Lyme Disease?
  • How often do you just assume there’s Lyme Disease instead of running all of the tests and just go straight into doing treatment and just do a trial of therapy?
  • Can you talk a little more in-depth about treatment? If you get a tick bite, should you immediately go to the doctor and get a course of antibiotics?
  • Do you have any tips for removing ticks? In cases where you can remove part of the tick, can you still send it to tickreport.com?
  • Can you give us a real live case where a patient was really struggling with their health and you figured out they have Lyme Disease and the treatment that they went through? Then how they responded to treatment?

Key Points made by Dr. Kelly:

  • The CDC says there are 300,000 cases of Lyme Disease per year, although there are probably more than that.
  • The biggest hotbeds are on the East Coast centered around Connecticut. The other big hotbed is Wisconsin. It trickles down to Chicago and the Midwest.
  • It’s everywhere. Everyone likes to think it’s just in wooded areas. It’s even in urban areas like Chicago. It’s found in every state. I’m sure it’s found in every province in Canada as well.
  • There are two big points: acute and chronic. In acute, if you’re scabbing and paying attention, you can pick up on it. Usually, with a tick bite, you get a bullseye rash then antibiotics because that’s all you need.
  • Most people don’t know they even got a tick bite because the ticks are so tiny. Over half the people don’t even get a rash, or if they do, it’s not the typical bullseye rash. Some people will get large red splotches. Sometimes they go to urgent care and get diagnosed incorrectly as cellulitis which is a bacterial infection of the skin.
  • If you get severe flu-like symptoms in the middle of summer and you were just walking in the woods the week before, it could very well be Lyme Disease. Some people get a bit of a cold then it clears up and they don’t think much of it until it becomes much more of a chronic issue.
  • Chronic symptoms are joint pain or swelling, chronic fatigue, brain fog, focus and concentration issues, mood changes, anxiety as a new issue for them, and heart issues like arrhythmias or irregular heartbeats and palpitations.
  • There are a lot of manifestations of it. It’s called The Great Mimicker. It mimics so many other diseases and problems, it can be hard to diagnose and find.
  • For Lyme Disease, the CDC recommends a 2-tiered step process. One is a screening test called the ELISA Test. If that’s positive, they’ll do a Western Blot which looks at different proteins and the antibody reaction to those proteins on the bugs. The problem with this is the screening test misses about half of the patients so it’s actually not that good.
  • There is a slightly better screening test called the C6 ELISA Test. You can request this. It’s a little better at picking up patients but it’s still not the world’s best screening test. You can ask your doctor to run both.
  • The Western Blot is a much more important test. It gives us a lot more information.
  • The bands are little proteins that stick out from the bugs. The bands are the antibody responses to those proteins. They’re trying to find different responses to the bugs.
  • There are two different antibodies: IgM and IgG. IgM is typically thought of as more of an acute infection so if you just got infected, the IgM will be high. IgG is usually more of a chronic antibody or a memory antibody so your body is prepared if it ever runs into that bug again.
  • Lyme Disease can hide out and allude the immune system and come back out, so that IgM can stay positive for a very very long time.
  • Typical labs will only run three bands. For example, on the IgM, only two are really super specific for Lyme Disease, for Borrelia burgdorferi.
  • There are other labs out there that will run the full Western Blot. My favorite is probably IGeneX Labs. They do two strains of the bug, not just one. They do every single band and they grade them, it’s not just negative or positive. It’s “negative indeterminate” and then it goes up to 4+. I think you get a better idea of what kind of reaction your body is having to that bug if it’s there.
  • There are some other tests available but unfortunately for Lyme Disease it’s just not that great. It’s a very very smart bug and eludes our immune system to protect itself and so these tests can be difficult and hard to find.
  • We’re waiting for better long-term studies to show what other tests can really help us determine if the disease if there or not. There are cultures available that can take up to eight weeks if not longer to run.
  • There are some T cells which are a different kind of antibody test. Sometimes it only shows up in the culture in a PCR which is another test you can run.
  • Sometimes you have to play investigator and keep looking underneath all of these stones to see if you can find it.
  • It’s possible to do all of these tests, have them come back as normal and still have Lyme Disease.
  • The CDC does not require any form of lab to diagnose Lyme Disease. This is straight off of their website. You need two things to diagnose Lyme Disease: probable exposure and have the signs and symptoms of Lyme Disease which are very diverse.
  • If it hasn’t shown up in the labs and you have a very strong clinical suspicion that that’s what’s happening, then I think it’s worth talking to the patient and deciding to try this and see if they’re doing better. It’s a reasonable option as long as everyone agrees that’s the best way to go forward.
  • There are several different locations where you can take the ticks and send them in and they will test the ticks for Lyme and co-infections.
  • One of them is tickreport.com but there are several others you can send them to. Usually there is a small fee.
  • If you get an acute tick bite and see it, the CDC recommends a couple of weeks of antibiotics.
  • Most Lyme literate doctors don’t think that two weeks is enough. It should be at least twenty days, if not longer, depending on the symptoms.
  • If you develop symptoms like joint pain, flu-like symptoms and things right away and go on antibiotics and they don’t get better, then you need to stay on the antibiotics for at least three months to see if they will clear.
  • If you’re lucky enough to catch it that early, you have a pretty good shot of clearing it. You just need to stick with it.
  • Some herbal and homeopathic treatments for acute tick bites are herbs like astragalus that you can take if you live in a Lyme endemic area to help prevent getting the infection in the first place.
  • Tick removal tip: Use tweezers. What you do not want to do is light it with a lighter. With the tweezers, you want to try to grab it from the head and pull it directly out. There’s also a gadget called the Tick Twister.
  • Case study #1: 17 year old girl. Biggest complaints: mood issues, a lot of anxiety, OCD-type tendencies and anger which all came on rather abruptly when she was around 14 or 15 years old.
  • She really hadn’t had any mood issues up until that age. All of a sudden she almost became a different person even to the point of being suicidal. She had been in some in- and out-patient therapy and on every medication you can think of and didn’t respond plus having bad side effects.
  • She is not happy and is struggling. Her mom is distraught because her baby is no longer herself and there’s nothing they can do to help. It’s things like that where you start to dig into the history.
  • Her family spends a lot of time in the forest preserves but she didn’t remember getting a tick bite but they do have dogs with ticks.
  • I did the IGeneX Test on her and she was positive. We started treating her with antibiotics. It was a struggle because she is young and had had enough of doctors. We convinced her and she started taking the antibiotics.
  • I saw her on my schedule about six weeks after she started on the antibiotics and I was just thinking “Oh no – I hope she feels better. What else can I do for her?”
  • She came in smiling, was happy and joking with me! I was floored – she was a new person! She was off all of her psych medications and doing well in school. It was a phenomenal turn-around.
  • Case study #2: 4 year old girl on the Autism Spectrum.
  • Her family lives a little south of the city in a wooded area with lots of possible tick exposures and lots of animals.
  • I started her with the Functional Medicine 4-R gut rehab. That makes huge impacts in and of itself which I always love to see. Then we started treating her with antibiotics.
  • After two weeks, her mom said, “She’s speaking in sentences and looking at us. My whole family is flabbergasted by the changes in this little girl!”
  • There are some really great stories. There are also patients who take a lot longer. If you’ve been sicker longer, if you’re older, if you have other issues going on, it’s going to take longer to weed through it all and get you feeling better. Unfortunately, not everyone gets well that soon.

Resources Mentioned:

WholeHealth Chicago

Dr. Casey Kelley’s facebook page

Lyme Disease website

International Lyme and Associated Diseases Society (ILADS)

Tick Report.com

Book Reclaim Your Energy and Feel Normal Again

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