I’d guess that Lyme disease nears the top of the “more info please” requests I receive from both Health Tip readers and WholeHealth Chicago patients. There are three good reasons for this concern:
- Lyme disease is definitely on the upswing, both actual patient numbers and geographic spread.
- Treatment, especially for chronic Lyme, can be a real challenge. When it’s discovered early–within a couple weeks of the tick bite–and treated correctly, Lyme disease is no big deal. But most people who get Lyme don’t even remember the tick bite (and you can’t even see half your skin anyway), so that months or even years after exposure they’re beset by a slew of unexplained symptoms and realize they’ve been feeling ill for a long time. At various doctors’ offices, the phrase “Your tests are normal” has become the mantra from hell. What’s happening is that some people are dealing with an undiagnosed/untreated chronic Lyme infection that’s gone under the radar of the inefficient Lyme screening blood test currently available.
- Physicians themselves don’t agree about chronic Lyme disease. Many prominent infectious disease specialists dismiss chronic Lyme sufferers as neurotic and, even when blood tests show clearly that Lyme is present, (mis)inform patients that there’s nothing to be done. Many primary care physicians throw up their hands and send Lyme patients off to the nearest and largest medical center, keeping fingers crossed for decent treatment, an iffy proposition at best.
My associate Casey Kelley, MD, recently returned from the International Lyme and Associated Diseases Society (ILADS) conference in Washington, DC. Dr Kelley probably knows more about chronic Lyme than just about anyone in Chicago, certainly more than the infectious disease docs at the Big Boy Medical Centers, whose consultations have been (to put it politely) disappointing. Given her expertise, I’ll step aside and let her tell you about it…
Lyme fundamentals
The bacterium Borrelia burgdorferi (Bb) is one smart little spiral-shaped bug causing a lot of big problems. Known as a spirochete because of its spiral, Bb is one of the most complex bacteria known, and it’s clever too. It finds a warm, welcome home in the human body and skillfully adapts itself to stay alive.
Bb is proficient in ways that sound like a sci-fi script: it protects itself with slimy biofilms that boost its resistance to antibiotics by a factor of 100 and can conceal itself inside a shell-like cyst that allows it to hide inside human cells where the immune system either can’t penetrate it or ignores it. Bb burrows its way into most areas of the body, but prefers the joints, heart, and nervous system even as it stealthily changes aspects of itself to better hide in each of these different tissues.
Currently, Bb affects hundreds of thousands of people and possibly many more. That’s right. We have an epidemic on our hands. Depending on who you ask, each year there are anywhere from 300,000 to 1.2 million new cases of Lyme disease in the US. With one of the most complex genetic make-ups of any known bacterium, Bb is smart, adaptive, and elusive.
It is also a survivor, the Bear Grylls of the microbial world. Bb makes fellow spirochete syphilis look like a dumb cousin.
Bb is so clever it rarely goes to battle alone. Often other tickborne bacteria such as anaplasma, ehrlichia, babesia, and bartonella come along for the ride, each capable of causing equally devastating human disease. But don’t let all this get you down. These bugs can be beaten. Yes, it can be a long and challenging journey, but it can be accomplished and you can recover.
Important note:
If you think Lyme doesn’t apply to you but you’ve been suffering for a long time with something, managing your symptoms with a lot of medicines and supplements, it’s definitely worth trying to rule out Lyme.
What exactly is Lyme disease?
Lyme disease is an infection with the bacterium Bb, but there are five subspecies and more than 100 different Bb strains in the US (300 strains worldwide) that are equally capable of causing infection. This diversity likely contributes to its ability to outfox both the immune system and antibiotic treatment, leading to chronic infection.
Lyme’s reputation as a great imitator means it affects individuals differently. Just about everyone knows Lyme is transmitted by an innocuous-looking, tiny tick. What you may not know is that most sufferers never even remember being bitten by a tick. It’s hard to watch for and catch an infection early when you have few to no warning signs you’re infected.
Here are two ways the infection expresses itself:
First-stage (acute) infection can cause flulike symptoms, joint pain, fatigue, and possibly a rash—all easy to mistake as a bad cold. Furthermore, not everyone experiences these symptoms. Bb also can cause (but doesn’t always) a variety of rashes, one classic example being erythema migrans, which looks like a red target. Far more common, however, are rashes that don’t look exactly like a target. The Lyme rash is short-lived, going away quietly on its own. Little wonder fewer than half of people diagnosed with Lyme disease even notice a rash.
Untreated Lyme infection smolders under the radar, adapting to the tissues where it lives, protecting itself with those slimy biofilms and cysts. Importantly, Lyme also suppresses the immune system so it’s difficult for your body to fight back. For this reason lab tests are often negative on even the sickest Lyme patients, because their suppressed immune systems can’t mount a response that would show on a test. An untreated Lyme infection or infections (remember, there are more than 100 different Borrelia strains) leads to chronic disease in 34% to 62% of patients. Significantly, symptoms including anxiety, severe fatigue, joint pain, and headaches often mimic symptoms of other chronic diseases such as multiple sclerosis, rheumatoid arthritis, fibromyalgia, chronic fatigue syndromes, Postural Orthostatic Tachycardia Syndrome (POTS), and mood disorders like anxiety and depression.
Next week: how Lyme is diagnosed and treated. Prevention too.
Be well,
David Edelberg, MD
Casey Kelley, MD
[…] more on Lyme disease, check out this blog by my doctor at Whole Health Chicago. And to read more about the diagnosis and treatment of Lyme, […]
When Life Hands You Lyme | The Story Shop
I was diagnosed with chronic Lyme in January 2014. Was unable to do any kind of antibiotic treatment due to leaky gut issues. Have eliminated sugar and gluten from diet, increased good fat intake (i’m about 60% fat) and have had 11 blood ozone treatments through a wonderful doctor in Wisconsin. The ozone treatments made a huge difference in my symptoms. I wish that at least one of the docs at Whole Health would become certified in this remarkable therapy. Also have been doing Advanced Cell Training (see their website/Facebook page) since May 2014. All in all, feeling very close to normal
Carol
The ID specialists I’ve seen did not even want to hear my symptoms or do a real evaluation. They wanted me to have everything BUT Lyme, despite the fact I have the classic symptom profile of Lyme (and perhaps Bartonella). Of course they used the faulty EIA test.
Dave
Thank you so much for this article! I was diagnosed a year ago September, but was feeling quite alone in my struggle. Inability to sleep through the night is the most difficult aspect of my disease to deal with. I sleep hard for an hour or two and then stay restless and wakeful for the rest of the night, often experiencing a dull headache. Even a sleeping pill doesn’t seem to work. I am looking forward to learning more.
Deb
Just thought I would throw out there that my wife and I seem to be having some early success battling a chronic Lyme infection with Ozone insuflations and saunas. Oxidative therapy seems to hold promise against this awful set of bacteria. Has anyone else employed home Ozone treatments with success?
roco
Diagnosed with Lyme by Dr. Kelly June 2014. She is the most wonderful doctor ever! After 2 years of sickness combined with frustrations of not getting diagnosed properly, I was led to Chicago from Tennessee. I am currently being treated, and I have 100% confidence in Dr. Kelly!
For those with Lyme disease…It is tough, but you are stronger!!!
Great job Dr. Kelly on your article and accomplishments! This Thanksgiving, I am most thankful for you!
Erin Scott
I LIVE IN TENNESSEE AND DEVELOPED LYME DISEASE IN EARLY 2012. AFTER GETTING VERY SICK WITH AN ARRAY OF SYMPTOMS AND SEEING OVER 7 SPECIALIST, I FINALLY WAS LED TO DR. KELLY BY MY COUSIN IN CHICAGO. IN JUNE OF THIS YEAR, I WAS DIAGNOSED! DR. KELLY IS A GOD-SEND! THE MOST WONDERFUL DOCTOR EVER! SHE IS CURRENTLY TREATING ME FOR MY LYME, AND I AM 100% CONFIDENT IN HER!
GREAT JOB ON YOUR ARTICLE AND ACCOMPLISHMENTS. MY BIGGEST THANKS ON THIS THANKSGIVING IS TO YOU!
BE STRONG TO ALL OF YOU WITH LYME. IT IS TOUGH, BUT YOU CAN BE STRONGER WITH DETERMINATION!!!
ERIN SCOTT
ive had this horrible thing for at least 6 years. the progress is slow and cyclical. i’ll be nearly symptom free for a week or few and then slam its back again. my lyme came with babesia. how I treat: IN EVERY WAY POSSIBLE: ALKALINE DIET, ELECTROLYTES IN WATER, ANTIBIOTICS, HERBAL ANTIBIOTICS (LOOK UP STEPHEN BUHNER), LIGHT EXERCISE AND STRETCHING, RIFE MACHINE, OIL PULLING, TRADITIONAL CHINESE MEDS, MASSAGE, REIKI, MEDITATION, GREAT SEX, NATURE IMMERSION. most importantly, LISTEN TO YOU BODY AND YOUR HEART:) good luck every one!
LIz
Well written. thank you. I was diagnosed a year ago, through Advanced Labs’ culture test, as all antibody tests were inconclusive. Sorting out treatment plan (already done IV antibiotics, oral antibiotics and supplements). Always on the hunt for “the latest” in Lyme. Want to read your next article!
V.W.
Hi Kathy
Dr Kelley has a Lyme protocol, some of which she’ll discuss next week. If you’re still in the Chicago area, schedule with her, bringing the Igenex results with you
Dr E
Dr E
Thanks your for the article and addressing this issue. Look forward to reading and learning more.
Judy Tucker
I was a patient of Dr Kelly a few yrs ago. I was very sick and not able to get the right diagnosis from well over 20 Dr’s. I was just recently diagnosed with lyme disease through IGeneX lab’s. My question is, how do we treat this horrible disease?
Thank you,
Kathy Ambrosat
Kathy Ambrosat
I’m just beginning the road to figure out if I have it, but early tests suggest I do have it, which means I’ve had it for 14 years.
James Morrin