Yes, I am serious. These days, from what we’re learning about Lyme Disease (more about correct terminology later), anything is possible.
Here’s who doesn’t have to worry: if you regard yourself as healthy and if asked, “Overall, how do you feel?” And answer, “Just fine, thanks,” then Lyme in any form is very unlikely and testing would be a waste of time and money. In other words, we don’t test populations of healthy people for Lyme, even if they live deep in the Wisconsin woods.
But if you’re troubled by undiagnosed longstanding symptoms, get tested for chronic Lyme. This is especially important if you were raised or vacationed in a “Lyme area” (New England, Michigan, Wisconsin, northern Illinois). Hopefully, your testing is done in the office of a doctor who knows about Lyme Disease, so that between your test results and her expertise, you can take Lyme Disease off the table.
Not surprisingly, the most common chronic symptom that patients present with in primary care medicine is ‘fatigue,’ sometimes expressed in colorful terms “My get up and go got up and went,” all meaning pretty much the same thing. The Wikipedia list of “Fatigue-Causes” goes on forever. Somewhere on that list is Chronic Lyme or you’ll happen upon the Health Tip I wrote.
You will soon read that so-called Chronic Lyme Disease is really two quite separate conditions. One is called Post Treatment Lyme Disease Syndrome (PTLDS) and the other Disseminated Lyme Disease (which in turn is subdivided into Stage 1 <early> and Stage 2 <advanced>.
The whole mess, PTLDS, Disseminated 1 and 2, are termed “Protean” after the Greek god Proteus, the original “shape-shifter” in myths, able to appear in multiple manifestations. A Protean disease has a great diversity of presenting symptoms. Fortunately, most medical or surgical problems are not Protean. Strept throat presents with sore throat and fever. Mono adds swollen glands and fatigue. Not very “Protean.”
Lyme?
Lyme Disease is “Protean extraordinaire.” Take a look at this Lyme Questionnaire by one of the pioneers in the field Richard Horowitz, M.D.
And, unfortunately, these symptoms virtually match the ones patients report with long COVID. In terms of numbers, long COVID vastly outnumbers chronic Lyme (one out of five COVID patients develops long COVID). Also, long COVID does eventually improve whereas chronic Lyme requires treatment. It was also quite a shock to discover that being infected with COVID could actually ‘reactivate’ an old chronic Lyme infection in someone who sustained an infected bite decades earlier.
What’s emerged from this bouillabaisse of symptoms are grim stories of patients who had experienced years and years of misdiagnosis and incorrect treatment. Ally Hilfiger (Tommy’s daughter) spent most of her teenage years in and out of psychiatric hospitals until someone diagnosed her chronic Lyme Disease. The late Kris Kristofferson had once been written off as yet another victim of Alzheimer’s Disease again until a perceptive physician diagnosed Lyme infecting his brain. Kelly Osbourne’s (Ozzy’s daughter) list of symptoms of pain, seizures and psychiatric disturbances lasted for years until she received correct diagnosis and treatment.
Now pause, right now, and consider what I asked earlier. Namely, if you have any chronic symptom or symptoms that have been going undiagnosed or are not responding to treatment, especially if you’ve lived in a Lyme rich area, ask your doctor to test you for Lyme.
Here’s what to ask for: “Do you mind testing me for chronic Lyme and co-infections using the Western Blot technique?” The “co-infections” are the other bacteria the tick can infect you with during the same bite, Bartonella, Babesia, Ehrlichlia.
You will hear one of three responses: “No. I read there was no such thing as chronic Lyme. Stay off the internet.” (go find another doctor) -or- “Okay, but we start with the ELISA test first and then go to Western Blot.” Politely refuse, pointing out that ELISA misses 50% of chronic Lyme cases. -or- “Sure. Go over to the lab.”
If your Lyme test is “positive,” there are two possibilities:
The test is reminding you that you got a tick bite in the past, you knew you were bitten, you may have had the famous bullseye rash. You were treated for the possibility of Lyme Disease but that treatment was inadequate. This is termed “Post Treatment Lyme Disease Syndrome (PTLDS)” You need treatment
Or
You were bitten in the past by an infected tick (any age, even childhood) but didn’t know it. Your immune system suppressed the infection possibly for decades and then some event or series of events (stress, COVID) allowed the Lyme infection to wake up and cause chronic symptoms. You need treatment
When you’re asking your doctor for Lyme testing what you really are looking for is the presence of long term untreated Lyme bacteria in your body. You may or may not remember a tick bite, you may or may not had the famous bulls-eye rash. In fact, you never even thought about Lyme until you started reading more about it and you realized you spent a lot of your vacations in the Northwoods of Michigan or Wisconsin.
This term for your condition is Disseminated Lyme Disease and gets no arguments from Infectious Disease specialists about whether or not it exists. It is quite real.
Here’s the latest summary from Medline, the Federal government’s information website.
If you look at the “Late” symptoms in the document above, you can see how Kris Kristofferson got misdiagnosed with Alzheimer’s, or Ally Hilfiger was tagged with a psychiatric diagnosis. Reported cases of Parkinson’s Disease, autism, and schizophrenia and have turned out to be disseminated Lyme, as have chronic heart rhythm disturbances, fibromyalgia, chronic fatigue syndrome, hypothyroidism, rheumatoid arthritis, multiple sclerosis and virtually every autoimmune disease. When these turn out to be disseminated Lyme, just about all of them will respond to antibiotic therapy.
And—there are two pieces of ‘best news’ to end this Health Tip.
First, as helpful as the Western Blot test can be for Lyme diagnosis, results can sometimes be ‘equivocal,’ neither firmly ‘positive’ nor completely ‘negative.’ The Gold Standard test agreed upon by all L.L.D.’s (Lyme Literate Doctors) is by Igenex Labs which was unaffordable for many patients. However, WholeHealth Chicago patients can use their health insurance for this valuable confirmatory test.
Second, ozone infusions for chronic Lyme continue to gain ground on a worldwide basis. WholeHealth Chicago is one of the few centers in the Midwest with a specific Lyme protocol using a combination of herbs, antibiotics and your ozonated blood to treat your chronic infection.
Be well,
David Edelberg, MD