Last week we looked at the fundamentals of Lyme disease and the different ways it can manifest. This week, diagnosis, treatment, and (first things last) prevention.
Diagnosing Lyme
The antibodies your body makes in response to infection with the Lyme spirochete underlie the two most common diagnostic tests for Lyme disease. The first antibody test is the ELISA (enzyme-linked immunosorbent assay) test, which misses anywhere from 35% to 70% of Lyme infections.
By definition a screening test should have at minimum 95% sensitivity (that is, it will produce a correct result 95% of the time), and thus many professionals consider the ELISA an unacceptable first step in the commonly used Lyme two-step screening protocol. In fact, research into the poor performance of the ELISA supports the need for a confirmation test for people who receive either a positive or a negative ELISA test result. Given this landscape, you begin to see the serious diagnostic challenge for both patients and their physicians.
The second test is called the Western blot or immunoblot, and it uses a blood sample to check your body’s antibodies against certain proteins on the Lyme bacterium. These are noted as characteristic bands on the test result, which looks something like a barcode.
Results of the immunoblot are subjective. Using an experienced lab is essential, and the skill level of the person reading the test results matters too. That’s because some bands in the “barcode” are more specific for Lyme than others. To a trained reader, even one highly specific band is proof enough to deliver a positive test result.
Commercial immunoblot tests cover just one strain of the Lyme bug and leave out many Lyme bands. Lyme-specific labs like IGeneX include two strains and all the bands. The IGeneX test, which starts at $260, is not covered by insurance but is often necessary to secure a diagnosis.
Other tests are available, but we currently lack an easy, inexpensive, and effective test for the disease and its activity.
Treating Lyme
Generally, the sooner treatment is begun after the start of infection the higher the success rate. Most people with Lyme require treatment with antibiotics, staying on the drugs until their symptoms improve. People who are diagnosed and treated immediately after the tick bite are most likely to respond well to a 30-day course.
Those who have been sicker longer usually need a longer course of antibiotics, and most patients need to take two or three types because no single antibiotic effectively treats all forms of the bacteria and any accompanying co-infections.
While antibiotics are the mainstay, other herbs and supplements can help support the immune system, protect the body, and reduce side effects. Commonly used herbs include Andrographis, Cat’s Claw, Japanese Knotweed, Artemisia, and Sarsaparilla, to name just a few. Important supplements include probiotics, which protect the body’s good bacteria while antibiotics are being taken (antibiotics kill all bacteria, good and bad). This is one of the most important aspects of treating patients holistically. We work diligently to protect the good bacteria that make up your microbiome in order to safeguard the gut from disruptions, both now and later, from the long term use of antibiotics.
Other valuable supplements include InterFase, which helps break up Lyme’s protective biofilm, K-PAX Immune to support the immune system, B vitamins, vitamin C, and fish oil. There are many different approaches, each tailored to the patient and his or her particular needs.
One common reaction to starting antibiotic treatment is the Herxheimer reaction, “herxing” for short. It’s thought to be caused by bacterial toxins being released into the body as a result of antibiotics killing the bacteria. Herxing typically includes flu-like symptoms and/or an exacerbation of whatever symptoms (which are complex and unique to each individual) the Lyme patient is experiencing. Herxing can occur at the beginning of treatment and last a few days to a few weeks. Some patients notice that it recurs every month or so (often related to the menstrual period) and becomes less intense each time.
Changing antibiotics, adding a new antibiotic, adjusting an herbal regimen, and switching from herbs to antibiotics (or vice versa) can also cause a Herx, though it’s important to note that not everyone experiences this reaction. If you do, it may not be severe at all.
Functional Medicine approach to Lyme
Functional Medicine searches for the underlying cause of an illness. It’s not good enough to merely diagnose you with Lyme (or chronic fatigue or MS)–I want to know why. Why are you sick? Why do you have these symptoms? Where are the imbalances in the foundations of your system? Functional Medicine is a medical thought process that searches for the “why.” Conventional medicine is content with a diagnosis—for example, MS—followed by drugs, which are often harsh and cause a lot of their own side effects and detriments to your system. Conventional medicine never asks “why do you have MS?”
Functional Medicine says “You have MS, but why? What brought this on? Was it an infection like Lyme? Was it too much stress for too long? Was it an undiagnosed allergy to gluten?” And not only this, but what other parts of the system are thrown off because of this pathological process? Are your adrenals fatigued? Is the gut leaky? Is the psyche drained? Functional Medicine aims to fix these underlying problems and thus treat the disease itself…not simply mitigate the symptoms.
Lyme disease and other tickborne illnesses lend themselves nicely to a Functional Medicine approach. Every person with Lyme faces a unique set of challenges, which requires my team to look at each patient individually. There is no cookie-cutter approach to treating these infections. Functional Medicine looks at you through a holistic lens and asks: What are these infections doing to the patient? Joint pain? Brain fog? Dizziness? Headaches? Hot flashes? What is this Lyme doing to the body’s foundations: membranes, hormones, detox pathways, inflammation, and the like.
It’s not enough to just kill the bugs. We also must support your immune system, heal exhausted adrenal glands, and protect/rebuild your gut.
At WholeHealth Chicago we have a unique team approach to Lyme. Combine my Functional Medicine expertise with Seanna Tully’s nutrition and herbs and Sujatha Manal’s homeopathy just to start. Because our treatments are patient-tailored, we also call on acupuncture, massage, chiropractic, yoga, psychology, physical therapy, healing touch, and psychiatry. Our tool kit at WHC is large and diverse.
Preventing Lyme
Lyme disease is everywhere. Though it’s most prevalent on the east coast and in Wisconsin and Michigan, the ticks that carry Lyme have been identified in every US state and around the world. A few prevention tips:
- You don’t need to be hiking in the woods to get a tick bite. Any place with vegetation can harbor ticks.
- When out walking, wear long sleeves and long pants, tuck pants into socks, and spray your clothing with DEET or Skin So Soft by Avon. Apply only to clothing–not to your skin.
- Do a thorough body check for ticks after being outside. Check your pet’s body too.
- Take a photo of any rash before it fades and show your doctor the picture immediately. Remember, though, you can have Lyme without any rash at all.
- Don’t wait to get treatment. In likely Lyme areas, up to 50% of ticks are infected. If your physician is uncertain how to treat you or is unsure if your symptoms require treatment at all, get a second or even third opinion.
In good health,
Casey Kelley, MD
I was diagnosed with lupus 2 years ago, I am to 52 years old. Do you think I am a little old for this diagnosis? I really wonder could this be Lymes disease??? R.A?,
Thank you for your time.
Margaret Lellig
Hi Margaret – Patients get a lupus diagnosis at all stages of life, and while the diagnosis is usually made earlier, this is not always the case. If you have a possibility of a tick bite exposure in your past and symptoms that correlate with Lyme, getting tested might be a good idea. If you’re in the Chicago area or have access to our office, scheduling an appointment with Dr Kelley would be a good next step.
Wishing you the best,
Dr. M
cliffmaurer
Hello,
I am on the journey of healing from Lyme. However, when my symptoms (rash, painful lymphnodes, swelling, joint pain, flu-like symptoms, etc) first started after camping two summers ago, my primary care doctor started me on doxycycline – and THEN decided to tested me. I have been on a long road, and taken multiple tests to secure a diagnosis but haven’t gotten a positive one. Will I ever? It is so frustrating to have by the book symptoms but no diagnosis from my doctors. Will your doctors consider me as a lyme patient, despite my lab work and begin treatment? I feel like I am chasing this bug throughout my body, but am not making headway in actual healing! Thanks!
S
Hi S. Currently Lyme is a clinical diagnosis. There are some new tests available to help aid in confirming the diagnosis, but it is still considered a clinical diagnosis.
It’s worth being seen and examined by a Lyme literate doctor (Dr. Kelley at WholeHealth Chicago) and seeing if your symptoms and exam lean towards a Lyme diagnosis.
Dr. R
This is great info. and I just listened to Dr. Kelley’s interview with Mike Mutzell. The only thing that I would add which I feel has been overlooked is the biotoxin angle, with respect to Lyme. I have a complex health history including severe MCS which is likely secondary to Lyme. In 2011, I saw an LLMD in my home state who reflexively prescribed the ‘standard’ Lyme protocol, starting with Doxy and Nystatin and adding other antibiotics later. I’m VERY aware of the Lyme’s virulence and the need to use antibiotics in multiple forms to address all the forms of the Lyme bacteria. I opted not to pursue antibiotic therapy because of my extreme sensitivities and reactivity and my fear of further upregulating those sensitivities.
Fast forward a couple years and I was eventually screened by a biotoxin doc. who follows Ritchie Shoemaker’s protocol. She conducted genetic testing and surprisingly, she discovered that I am in a small subset of the population that is multi-susceptible which means I am unable to clear toxins from BOTH mold and Lyme. Had I followed the protocol of the LLMD I saw, I would’ve become incredibly sick once the antibiotics started killing the Lyme (in the absence of an appropriate binder), it would likely have been chalked up to a herx, I may have been told to march thru it and who knows where that might’ve led.
My point is this: I don’t hear a lot of docs. who are treating Lyme doing this kind of testing (HLA DR). Yes, it is expensive and may be cost-prohibitive. However, it could significantly impact your treatment and radically effect the outcome for those who are susceptible. I think potential mold exposure is often overlooked in Lyme patients as well and is often a factor in play. Mike Mutzell did a terrific interview with Dr. Keith Berndtson on this topic.
Nancy
I would like to thank Dr. Kelley for recently finding my lyme disease. I was diagnosed w/ MS 10 years ago and no one thought to check me for lyme disease. I have told several doctors over the years about my ongoing symptoms. No one ever checked me for lyme. I even told a neurologist a couple of weeks before my lyme diagnosis that I thought I had more ongoing every day symptoms than the normal MS patient. The neurologist ignored me, said I was fine, and sent me on my way.
THANK YOU TO DOCTOR KELLEY! Even though it is not the diagnosis that anyone would like to hear, at least I have hope that there is light at the end of the tunnel.
Alexandra
Jen – yes, you can feel better in time, but you need to discover what’s going to work for you. Best to have an LLMD who can do bloodtests for your chemistry and boost with supplements where needed. Also, Lyme Net has treatment discussions all the time – there are so many treatments to look into to repair from Lyme. Example – you mentioned muscle aches – everyone usually finds a magnesium supplement that works for them – that eases muscle difficulty and many other body processes. Finding other anti-inflams, like I get bulk turmeric powder that I dip an emply capsule into – that takes down inflammation. There are lots of treatments that are anti-inflammatory. You’ve only just begun.
Robin
I was diagnosed with Lyme in July. I did 6 weeks of of dioxycycline, the switched to amoxicillin. After three weeks on that I developed severe bladder, pelvic pain, diarrhea, and ended up in the ER. Of course they found nothing and sent me home. Since then I have had severe muscle aches, feeling like I have the flu constantly and am not able to function. I’m on a multi of supplements and herbal drops and pill for Lyme . Will this ever go away? This is very depressing to feel this way everyday. I cannot do this for “years” help please!
Jen
Like Megan, I also have Lyme, went to WHC a few years ago and they used the wrong test, told me I didn’t have Lyme and I went undiagnosed for over a year following that visit. I’m glad that you have since learned more about Lyme disease, but feel it’s misleading to represent yourselves as “the most knowledgable in Chicago” as in the previous blog post.
For Lyme patients: make sure any doctor you see can point to at least three people with a similar constellation of symptoms, co-infections and test results whom they have cured. Years of experience in treating the disease and involvement in current research, in addition to ILADS, are important too.
J
Would the same precaution of wearing long sleeves, long pants, etc and spraying the clothing only (not skin) with DEET work to prevent dengue fever? We have been avoiding trips to regions where dengue fever is prevalent (Mexico and Central America) because of concern about this disease.
Colleen Jersild
Hi Megan
Two years ago I didn’t have access to the test we now use routinely. I admit right up front that the test I did have available back then was not a good one (although I didn’t know it) and we don’t use that test anymore. I am glad you did find a Lyme oriented doc. It may be of interest to you to learn that both Northwestern and Rush still use the inadequate test and when a patient brings in a proper test from a Lyme doctor for their interpretation, she is told the ELISA is “just fine.” Moreover, and you’ll appreciate this, any more detailed testing, as well as the diagnosis of chronic Lyme, has no clinical value at all. It is all reminiscent how years ago patients brought in their test results for chronic yeast overgrowth and were summarily dismissed by the specialists. Anyway, I am very glad you found answers to your problems and really regret that at the time we couldn’t help you.
Dr E
Dr E
I find this all pretty funny you all talking about lyme disease. And now the KICKER , how to test for it!!
I was to your clinic about 2 years ago asking to be tested for lyme. I had many symptoms. Dr Edelberg did just what your article states is not proper testing, which is the ELISA. Just disregarded my having lyme.
So i went on for a year longer than necessary suffering with lyme disease.
I’m disgusted!!!!! put my symptoms off, made me feel it was all in my head and NOW the kicker you are using the proper testing.
Darn it , you could have saved me a year earlier. Now my money is going to someone else who we like to call a LLMD.
megan
Jane and Sue,
If you aren’t having any symptoms, then I wouldn’t go chasing after the bug(s). You can always meet with our nutritionist/herbalist Seanna Tully to use herbs to help keep your immune system strong.
The amount of time required for the tick to attach to transmit the bacteria varies depending on the source of the information, but ranges from 20 minutes to hours/days.
If you notice a tick and get a rash or flu-like symptoms within the week, then you’ll want to contact your physician and get tested.
Dr. Kelley
I found a tick on my ankle last year after a walk in the woods. I was able to get it off me immediately. However, I estimate the tick was probably on my ankle for over 40 minutes.How long does it take for a tick to infect a person? I have had no real symptoms but should I still get tested?
Sue
Thank you for the in depth information, as always. This newsletter already has such valuable information.
I haven’t experienced the symptoms (either short term flu-like symptoms or longer term joint paint, etc.) However, I have gone hiking and found ticks in my home afterwards (likely from the dog). Should I get tested for Lyme anyway? My concern is that it is lying low, but doing damage and would it be better to treat it now?
Thank you!
Lois