Lyme Disease Mimicking Sjögren’s Syndrome
Lyme disease can mimic Sjögren’s syndrome. In this Inside Lyme Podcast, I discuss the case of a 43-year-old woman whose diagnosis changed from suspected lymphoma to primary Sjögren’s syndrome and finally to secondary Sjögren’s syndrome caused by Lyme disease.
This case was originally described by Smiyan and colleagues in the journal Reumatologia in 2019.
Click below to listen to the full podcast.
Case Presentation
A 43-year-old woman had been ill for six months with low-grade fever, generalized lymph node swelling, migrating joint pain in the arms and legs, dry mouth and eyes, weight loss, and fatigue.
Because of the swollen lymph nodes, an oncologist initially suspected lymphoma. A biopsy appeared to support this concern.
However, additional evaluations suggested another explanation.
- A dentist documented severe reduction in saliva flow and diagnosed xerostomia.
- An ophthalmologist diagnosed keratoconjunctivitis sicca, a condition characterized by dry eyes.
- A rheumatologist concluded that the patient met diagnostic criteria for Sjögren’s syndrome.
Keratoconjunctivitis sicca refers to dryness of the conjunctiva and cornea due to reduced tear production or rapid tear evaporation.
[bctt tweet=”A woman’s diagnosis changed from suspected lymphoma to Sjögren’s syndrome and finally to Lyme disease.” username=”DrDanielCameron”]
Testing for Lyme Disease
The rheumatologist also tested the patient for Lyme disease after learning that she had experienced a tick bite approximately one year earlier.
Her laboratory tests were positive by enzyme immunoassay and confirmed by both IgM and IgG Western blot.
Lyme Disease Mimicking Sjögren’s Syndrome
The physicians ultimately concluded that Lyme disease explained the patient’s symptoms.
According to the authors, the lymph node enlargement initially thought to represent lymphoma was actually reactive lymph node hyperplasia related to Lyme infection.
In this case, Lyme disease mimicked primary Sjögren’s syndrome.
The patient was treated with doxycycline for 30 days. After treatment:
- Her fever resolved
- Dry mouth and eye symptoms improved
- Lymph node enlargement decreased or resolved
Secondary Sjögren’s Syndrome
The authors concluded that the patient did not have primary Sjögren’s syndrome, which is a systemic autoimmune disorder.
Instead, she developed secondary Sjögren’s syndrome triggered by Lyme disease. The timing of symptoms after a tick bite and the improvement with antibiotic therapy supported this interpretation.
Autoimmune conditions associated with Sjögren’s syndrome include:
- Thyroid disease
- Lupus
- Rheumatoid arthritis
- Multiple sclerosis
- Type 1 diabetes
- Chronic inflammatory demyelinating polyneuropathy
- Psoriasis
Clinical Lessons from This Case
- Evaluation by multiple specialists can help clarify complex diagnoses.
- Diagnoses may evolve as new clinical information becomes available.
- Lyme disease can mimic autoimmune disorders such as Sjögren’s syndrome.
- Secondary Sjögren’s syndrome associated with Lyme disease may improve with antibiotic treatment.
Questions Raised by This Case
- How often does Lyme disease mimic lymphoma or autoimmune illness?
- Should patients with autoimmune disease or unexplained lymphadenopathy be evaluated for Lyme disease?
Thank you for listening to another Inside Lyme Podcast. The information provided here is general medical information and should not replace personalized medical advice from a qualified clinician.
Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.
Symptoms • Testing • Coinfections • Recovery • Pediatric • Prevention
Hello My Lyme disease went undiagnosed and untreated for 30+ years. At 48 years old I started seeing a rheumatologist and UHN and after several tests and being part of a study I was diagnosed with UCTD. I have symptoms of lupus, Sjogren’s, Reno syndrome. I have had thyroid cancer, Graves’ disease.
Sjogren’s or Lyme or both? I am currently 62, white female in Yorktown, VA. In 2016, May, I became extremely ill with neurological symptoms (POTS, brain inflammation, dizziness, flashes of red light when I blinked, vertigo, severe headache, trigeminal neuralgia, glossopharyngeal neuralgia, tachychardia and more). I was diagnosed in the ER with Lyme and that diagnosis was later confirmed by Sabra Bellovin, MD. She also discovered that I had tested positive for Sjogren’s but I didn’t pay any mind to that because I was asymptomatic ( or was I?) and I thought it was just a disease of dry eyes and mouth. No biggie, right? After two years of Lyme treatment with antibiotics and Nutrimedix tinctures, I felt mostly normal but I had developed a strange pain in my inner thigh that prevented me from standing up straight. This pain has continued to get worse. In Feb of 22, the ligaments and tendons around my left knee suddenly ruptured for no reason and I had to live with that completely disabling pain and injury. It’s still injured but I can get around most days. This past winter (2023) I suddenly developed itchy dry eyes, severe dry mouth and the pain in my pelvis/inner thigh is so bad that I can’t sleep at night. I take so much Tylenol and Ibuprofen that I am concerned about my stomach, liver and kidneys. I doubt anyone would prescribe any effective pain medicine because of the opioid crisis, so i don’t bother wasting my money and time consulting with any doctors. I believe that I have some type of connective tissue disorder. My mother has Reynaud’s and arthritis. I’ve never had symptoms of arthritis. Most of my symptoms seem to be neurological. I live in so much pain every day but manage to live a very simple life but I’m exhausted and have no social life. I can’t go anywhere by myself because I can barely walk for any length of time before my leg muscles become severely fatigued, painful and I must stop. I wish so much I could find a doctor that I could trust to help me. No patient should suffer in pain like I do. It’s cruel and inhumane.
I have patients with Lyme and a rheumatologic problem. It is hard to know if a positive Sjogren’s test is a true positive even for rheumatologists.
I suspected the Sjogren’s test wasn’t reliable ( like the Lyme test). Interestingly enough I’ve had syncope, low blood pressure and low body temperature ( perhaps related to vagus nerve dysfunction) since I was a child. I’ve also had a hundred tick bites in my life. As a teen, when I felt a fainting spell coming on, I would urge my friends to locate salt anywhere they could and place it in my mouth. The salt would snap me right back to normal. When I consulted with my family doctor at that time they told me that I had hypoglycemia. As I matured, the symptoms seemed less frequent, in fact, rare until I got Lyme. I felt as though my entire nervous system was under attack. Nothing worked properly ( poor cognition/dementia, GI motility issues, vision problems, BP and heart rate irregularities) and I’ve had bladder incontinence issues ever since. It’s so frustrating not knowing what is at the root of these symptoms.
Hi Elizabeth! I have pretty much all of your same symptoms! I was bit as a kid and didn’t realize I had Lyme disease… was bit again at 50 years old and it been a nightmare! All of my issues all these years were due to Lyme and now knowing after being bit a second time been treating the Lyme and it’s not been easy!! I have tested positive also for Sjögren’s disease along with EBV.. having also now every symptom of Lymphoma! It’s been a nightmare to say the least! I am continually going to Dr.’s to figure out if I now have Lymphoma? I feel your pain! It is devastating to wake up everyday feeling like death is at your door! Stay strong and keep fighting! I have been taking Ivermectin, black seed oil, soursop tea and bitter apricot kernels and I am feeling noticeably better!!! My pain is aleviating and my energy and overall wellness is slowly coming back! From my research Lyme disease and cancer go hand in hand! So I started treating my symptoms as if I am dealing with cancer! It is helping tremendously! Can’t hurt to try? Just thought I would share with you what I have been doing.. best of luck! Jennifer
Thanks Jennifer. Sorry to hear about your struggles. The past two days have been unbearable. Then this morning, I woke with barely any pain and much more energy and I feel ‘normal’ in comparison. This is the unpredictable roller coaster that I live with all the time now. I never know when I’m going to ‘crash’ and the crashes seem to be getting worse. I want to rush as quickly as I can to catch up on my work and chores but I know if I am too enthusiastic, I will become disabled once again for another few days. So frustrating! One thing I’ve noticed is that the moon cycle and barometric pressure changes contribute to my pain and exhaustion. The moon and I have always had a love hate relationship but those full moons really disturb my circadian rhythm and I can’t sleep which leads to more pain!! I’m going to give the blackseed oil another go. I’ve used it a few times but it gives me those pungent burbs and I don’t care for the flavor. I haven’t tried ivermectin but I have used artemisinin with success.
Elizabeth!!
Thank you so much for posting your symptoms etc. I’m 40 and have dealt with a lot of these things too! I know you wrote this 2 years ago but your thoroughness is helping me to be able to get my own help. Please don’t give up!!!! Keep persevering and RESTING and taking care of yourself! God LOVES you especially when you can’t see it!
Again, thank you for writing this and keep persevering!!
Esther
It took 11 years to be diagnosed with Lyme Disease after being prescribed every anxiety and depression medicine you can think of. After two years of treating Lyme, I was back to about 85%-90%. Then a heart valve replacement surgery opened up my immune system, and I haven’t felt well in 7 years. In this case, I was finally diagnosed with primary Sjogrens Syndrome. It took two years of negative Sjogrens blood tests to finally get a lip biopsy, which was positive. In the case of a positive lip biopsy, I would guess, in my case, it actually is Sjogrens. Neuropathy, dizziness, minor balance issues. Also still test positive for Lyme Disease.
There is not enough research on Lyme and autoimmune disease to determine if they are related or two common illnesses. It it also difficult to be sure a tick borne infection has resolved.
Have you checked into SOT therapy for your Lyme? I am having patients report good responses to this novel therapy.
Dr B
I started having chest pain in July 23, was misdiagnosed until Sept 23. When my left lung collapsed due to fluid in my chest cavity. They also found many cysts in my right lung. The largest being 6cm. After many test they diagnosed me with Sjogrens. Even thou I didn’t have dry eyes or dry mouth. I felt terrible, migrating joint pain, tired, brain fog, chest pain, head aches, fever. Also my liver is failing. They did a lip biopsy that came back positive. I also had myself test for bacteria. It came back positive for 3 different kinds. I started taking antibiotics in Dec. I am on week 7 of antibiotics and starting to feel better.
Is it possible that I have Sjogrens and a tick bacteria? Or is bacterial infections causing the Sjogrens reaction?
I live in Canada and the whole bacterial infection, tick bite has been very frustrating. There is not a lot of support here for it. Please help.
I have patients with Lyme disease along with an underlying disease. I also have seen patients who realized they had Lyme disease after gains when they take antibiotics for another condition.
I have been through something similar. At the end of the day Sjogren’s Syndrome describes a set of symptoms, but those symptoms can be caused by quite a few different things. Doctors are trained to treat the symptoms but not to look for the underlying cause. I refused to submit to this way of thinking because my symptoms came on suddenly, which seemed obvious to me that it was some sort of infection. I sought out doctors who would help me determine the underlying issue that was causing my sjogrens symptoms. I believe it is different for everyone and can often be multi-layered. All of my bloodwork was normal, so PCP and other mainstream doctors did not look any further. But I demanded a test for Epstein Barr Virus, which was positive. I then found a functional practitioner to treat EBV. I worked hard for 9 months to get it to go dormant and my sjogren’s symptoms improved slowly, but when I retested I got the same antibody pattern. At this point my doctor said I had chronic EBV, but the reason behind it was because there was probably another hidden infection. Lo and behold, she was right – I recently learned that I have ehrlichiosis. I believe this has been a chronic infection since I was a teenager but went unnoticed – I suffered from extreme fatigue for 20+ years and was told I have depression over and over and over despite insisting that there was something physically wrong with me. I also believe the ehrlichia invaded my parotid glands because taking antibiotics has greatly and quickly improved my dry mouth. There are clearly infectious agents that can evade the typical protocol that doctors follow – I’m sure Dr. Cameron is well aware of this due to his Lyme experience. Other things that can cause Sjogrens Syndrome are: botox and fillers, cytomeglovirus, human t lymphotrophic virus, h. pylori…that’s what I’ve found, I’m sure there are more, including other tick bourne infections.
The methods used to evaluate, diagnose and treat ill people in this country need to be revised! Functional medicine doctors have it right. Treating people’s symptoms is not a solution. If I had accepted what conventional doctors had told me – that I’d never find the root cause and that it was permanent, and been “treated” with immunosuppressants, it literally would have gotten worse and worse because it was an INFECTION. Learn to think outside the box, doctors. Do better, medical system! Do not be afraid to advocate for yourself patients – you know your body! And thank you to those practitioners that actually listen to their patients instead of gaslighting them for years.
Hallo, ich habe seit vielen Jahren eine chron. LB.
Immer wieder scheint im Labor ein Hinweis auf das SS auf.
Deshalb habe ich Hr. Dr. Horowitz um Auskunft gebeten und folgende Antwort erhalten:
“Lyme kann Autoimmun-Probleme verursachen, ist jedoch kein wahrer Fall von Sjörgen’s (aber Autoimmunmarker treten bei einer chronischen LB oft auf)”.
Ich habe die LB im Labor Dr. Schwarzbach Armin in Augsburg/Deutschland nach 55! Jahren chronischer Erkrankung mit dem Test “TickBlex” bestätigt erhalten.
Der TickBlex findet die round bodies. Der Test wurde von der finnischen Molekularbiologin Fr. Dr. Elona Gilbert erfunden und seit 2017 in Deutschland bekannt.
Beste Grüße aus Österreich.
Thank you for sharing this. Many chronic Lyme patients show autoimmune markers without having true Sjögren’s, so your experience makes sense. It’s encouraging that Dr. Schwarzbach’s lab and Dr. Gilbert’s TickPlex innovation helped finally clarify things for you after so many years. Sending best wishes