Yes, I am serious. These days, from what we’re learning about Lyme disease (more about its specific terminology later), anything is possible.
If you regard yourself as healthy and were asked, “Overall, how do you feel?” and you answered “Just fine, thanks,” then Lyme in any form is very unlikely and testing you would be a waste of your 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 where Lyme is prevalent.
But for others of you who have for months or years been troubled by one or more symptoms (Lyme has many symptoms) that have gone otherwise undiagnosed OR if you were diagnosed as having something, but haven’t responded to conventional treatment, you really should get tested, especially if you grew up in or spent time in a Lyme-rich area (New England, Michigan, Wisconsin, northern Illinois).
With any luck, your testing will be done in the office of a doctor who knows something about Lyme disease, so that with your test results and her expertise you can at least take Lyme disease off the table.
Tricky symptoms of Chronic Lyme
Let’s take one of Lyme’s symptoms, fatigue, as an example. Feeling tired all the time is an underlying symptom of literally dozens of conditions, from emotional depression and underactive thyroid to heart disease, neurological disorders, early cancers, and anemia. Here’s the wiki list if you’re interested.
When you go to a doctor complaining of fatigue, your medical history, physical exam, and lab tests will trim the list of potential causes significantly. Let’s say your doc finds you have an underactive thyroid gland. Good news! It’s a clear-cut condition with a straightforward answer. You’re prescribed thyroid replacement and, lo, you feel better almost immediately. Oh, if all patient care were so simple.
But what if you felt only 10% better after treatment? Then it’s back to the drawing board, with more tests and more doctor visits. And if your doctor doesn’t test you for Lyme then Lyme as a cause of your fatigue has not been ruled out.
And that’s only the first part
Understand that so-called chronic Lyme disease is really two quite separate conditions.
- One is called post-treatment Lyme disease syndrome (PTLDS).
- The other is called disseminated Lyme disease, which in turn is subdivided into Stage 1 (early) and Stage 2 (advanced).
Both types of Lyme disease are labeled “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. Strep throat presents with sore throat and fever, mononucleosis with swollen glands and fatigue. Not protean.
Lyme? Oy veh!
Lyme disease is protean extraordinaire. Here are two of the most popular Lyme questionnaires, pretty much respected by Lyme-literate physicians. Click through and have a look at the symptoms, from rib pain to irritable bladder and everything in between.
—Horowitz Lyme-MSIDS Questionnaire
If that’s not challenging enough, here’s a list of still more symptoms linked to Lyme disease.
- Cough, shortness of breath
- Unexplained fevers, chills, sweats
- Cystitis (bladder inflammation)
- Chest plain/heart palpitations
- Cardiac irregularity
- Double/blurry vision, pain or floaters
- Photophobia (abnormal aversion to bright light)
- Hair loss
- Tick bite(s)
- Rash at bite site or other areas
- Difficulty swallowing
- Swollen glands
- Sore throat
- Swelling around the eyes
- Unexplained weight loss/gain
- Buzzing, ringing or ear pain
- Difficulty eating
- Nausea or vomiting
- Diarrhea or constipation
- Eyelid/facial twitching or Bell’s Palsy
- Joint pain and swelling
- Abdominal cramping/pain
- Irritable bladder or bladder dysfunction
- Testicular/pelvis pain
- Neck creaks, cracks or stiffness
- Joint or back stiffness
- Muscle pain or cramps
- TMJ (jaw pain)
- Tingling or numbness
- Poor balance
- Difficulty walking
- Seizure activity
- Stabbing sensations
- Personality changes
- Mood swings
- Difficulty concentrating or reading
- Menstrual irregularity
- Loss of libido
- Trouble speaking
Grim stories and a suggestion
What’s emerged from this bouillabaisse of symptoms are grim stories of patients who experienced years and years of misdiagnosis and incorrect treatment. Ally Hilfiger spent most of her teenage life in and out of psych hospitals until someone diagnosed Lyme.
Kris Kristofferson had been diagnosed with Alzheimer’s until a doctor tested him for Lyme. Kelly Osbourne’s symptoms, including pain, seizures, and psychiatric disturbances, lasted for years.
Please pause, right now, and consider the question I posed earlier. Namely, if you have any chronic symptom or symptoms that have been undiagnosed or you’re not responding to treatment for your symptoms—and especially if you’ve lived in or visited a Lyme-rich area–ask your doctor to test you for Lyme.
Here’s the question to put to your physician: “Could you test me for Lyme using the Western Blot technique?”
You will hear one of three responses:
- “No. I read there’s no such thing as chronic Lyme. Stay off the internet.” If you hear this, find another doctor.
- “OK, but we’ll start with the ELISA test first and then go to Western Blot.” Politely refuse, pointing out that ELISA misses 50% of Lyme cases.
- “Sure. Go on over to the lab now.”
Let’s talk about that snippy “no such thing” answer. There are different stages of Lyme disease.
First, there’s acute Lyme disease (also called early localized Lyme or Stage 1 Lyme), which is a flu-like illness occurring within days of a tick bite. Nobody argues about this. It’s easy to treat with three weeks of an antibiotic like doxycycline.
Second, what’s commonly called chronic Lyme disease probably should be dropped (though it never will be) and replaced by two separate and distinct entities.
- PTLDS The first exists in someone who had a definite diagnosis of Lyme and received adequate treatment but never felt well again OR this person felt well for a while and then months later had a recurrence of symptoms that he or she attributed to Lyme. This condition is called post-treatment Lyme disease syndrome (PTLDS). Symptoms are real, but there’s little evidence of infection and clinical studies have shown that antibiotic treatment is no better than placebo. In fact, some research is showing that PTLDS is an autoimmune disorder triggered by the initial Lyme infection.
- Disseminated Lyme disease The second condition is completely separate. It occurs in someone who has been infected with the Lyme bacteria for anywhere from months to years but never knew it OR they knew they once had Lyme but likely received inadequate treatment. All they know for certain is they’re chronically ill with a variety of symptoms and have been told repeatedly “we can’t find anything wrong with you.” The term for this condition is disseminated Lyme disease, with new symptoms occurring months to years after the original tick bite. This illness does respond to antibiotics.
Interestingly, even though PTLDS is allegedly not an infection, most doctors experienced with Lyme disease (called Lyme-literate doctors) will give their patients a course of antibiotics as a better-safe-than-sorry precautionary measure.
Here’s a Lyme disease summary from Medline, the federal government’s information website.
Since some of the most serious symptoms of advanced disseminated Lyme include the following, you can see how Kris Kristofferson got misdiagnosed with Alzheimer’s and Ally Hilfiger was tagged with a psychiatric diagnosis.
- Abnormal muscle movement
- Joint swelling
- Muscle weakness
- Numbness and tingling
- Speech problems
- Thinking (cognitive) problems
Some 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 conditions turn out to be disseminated Lyme, just about all of them will respond to antibiotic therapy.
Are you getting the picture? The so-called Lyme Wars are completely unnecessary. Confusion over terminology has prevented people suffering deeply with chronic illnesses from being correctly diagnosed and appropriately treated.
Any doctor who tells a patient “there’s no such thing as chronic Lyme disease” is simply unfamiliar with the accepted terminology and is possibly endangering his patient’s life by withholding lifesaving treatment.
David Edelberg, MD
12 thoughts on “Chronic Lyme Disease? Me? Are You Serious?”
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Hi Dr. E- I would agree with most of your article. Yeah, here’s the “but”- PTLDS should be labeled Chronic Lyme, that’s what it is. When symptoms wax and wane for years, it’s a chronic condition. I disagree with your interpretation of disseminated LD. (Sorry) I was diagnosed by Elisa/WB, several EM’s (and all the goodies that go along with that) and told by LLMD it was “disseminated, meaning it had already spread wherever it chose to go. Lastly, Lyme Wars is unnecessary but it is not due to misconstrued terminology. It has happened due to ISDA’s somewhat ” in” with the CDC and their severely lacking and questionable protocol. If ILADS science and guidelines weren’t continually ignored and blocked for decades, many would find relief. TBD cannot be cured. After almost 15 yrs. (and NO new bite) and wonderful treatment with LLMD, the twice yearly flares have now been replaced by complete return of all my original symptoms. To me, this is not a reasonable goal but you are correct in that having a goal of feeling “somewhat” better is about all we can hope for.Dr. Ross’ protocols are great and I certainly wish you continued success! Thanks.
Great article but I disagree with the PTLDS conclusion. We know current diagnostic tests, i..e. Quest and LabCorp western blots, are inadequate so there’s no good way to know if there are still persister bacteria deep in tissues. And just because these same persisters don’t respond to traditional antibiotics doesn’t mean that they don’t exist. It could just be a matter of not having adequate tests and drugs for the persisters and other forms that the Lyme spirochetes might have taken since initial treatment.
I’ve been having the most success with the Dr Marty Ross’ protocols which are now available in book form on amazon. He will use antibiotic schedules that alternate dosing (or use pulse dosing) combined with a good support system of diet and herbs for immune stimulation, cytokine control etc. Long term total cure may be difficult, if not impossible, to achieve but a reasonable goal would be to inactivate the infection as long as possible so that relapses would be rare and quickly treated when they occured
Umm so if the words chronic illness is used when talking about the advanced stages of Lyme. Chronic Lyme sums all of it up in 2 nice words. It works it’s short, it’s real and it hurts really really bad.
Oh I am so right freaking here. Long term Lyme for 30 yrs, just went through 2 week fever, doctor here in NC argued with me stating”Lyme’s is not a disease or needs to be treated” I am blown away, also I was denied request from infectious disease. No alternative help offered. I am paralyzed on left side of face, have all horrible symptoms and co infections can you offer any suggestions or help, I live in a Lyme illiterate state. This Doc told me” the Lyme’s tick isn’t here” how uneducated and unprofessional is this.
Thank you for writing this article. It is a good summary of lyme. But I take issue with the lack of accountability of the medical profession. “Confusion over terminology” & “simply unfamiliar with…terminology” is inaccurate. Even when presented with the science most Doctors are dismissive, resistant or even down right abusive. There is a reason that there is an official report of Human Rights violations re: Lyme/relapsing fever. Tired of Drs skirting &/or white washing the culpability of their profession. Lyme wars are not simply about terminology. The first step to fixing a problem is admitting one exists in the first place. If the medical profession can’t even acknowledge their role in failing to acknowledge the science, failing to adequately knowledge transfer the science and clinical expertise in Lyme, failing to advocate for the ethical treatment of Lyme patients, failing to fight for their own rights to treat Lyme based on clinical guidance, failing to limit the influence of BigPharma and IDSA on suppressing progress and knowledge transfer in Lyme …then efforts to resolve the Lyme issue will continue to move at a snails pace.
This is a great blog but I don’t agree with your conclusion that more antibiotics once the disease has disseminated can actually treat/cure the patient. I have been on enough support groups to see that this is not at all true and that long-term antibiotics create chronic yeast infections and gut dysbiosis, not to mention the possibility of mitochondrial dysfunction since the origins of mitochondria in our cells are bacterial in nature. There is no shortage of alternative remedies to try and people do find relief although rarely a long-term cure. Disulfiram is the most recent promising drug for persistent Lyme disease.
Excellent article. I’m in the very chronic or advanced or what ever it is being called now ,stage…since 1981. Nothing has worked. I have constant symptoms and it’s increasingly hard to deal with. I’m at a loss as to what to do any more. Every day is different, everyday I try to carry on. I was just in the ER Sunday and was told that the medical professionals do not recognize chronic Lyme!
Linda Silvasi Kelly
Antibiotic therapy does not work for the vast majority with late stage chronic Lyme. This sounds like just another dismissal of the patients experience who do not respond to this woefully inadequate treatment.
David, thanks for this. As usual the combo of your info and your writing are a real (and rare) treat.
I don’t know if you’re aware of it or not, but we recently produced A Meditation for Living Well with Lyme disease by Glenda Cedarleaf MSW. It’s a good addition to the tool kit. She created it with a doc who treats a lot of it.
All best, Belleruth