What is that smell?

It may not seem like an especially concerning or troublesome symptom. After all, what's the big deal about having superpower smelling abilities? You can smell the flowers, the gourmet food, and the freshly brewed coffee better than anyone else. But, for many patients hyperosmia is not a blessing and is more than a simple annoyance. It can cause extreme discomfort, even making patients sick at times.

Research studies examining impaired or heightened sense of smell have been focused primarily on patients suffering from neurological disorders, like Alzheimer’s and Parkinson’s disease. Only recently, have researchers begun to investigate the connection between olfactory disorders and autoimmune diseases. 

And, while there have been many anecdotal reports from Lyme disease patients complaining about their sensitivity to smells, there has never been a study examining the association between Lyme disease and hyperosmia — until now.

Nose

Study finds 50% of patients with Lyme disease reported having a heightened sense of smell, also called hyperosmia.

After administering questionnaires to 16 serologically positive Lyme disease patients and 18 control subjects, researchers found that 50% of the patients with Lyme disease suffered from hyperosmia, versus none of the control subjects. The findings were published in the Arquivos de Neuro-Psiquiatria Journal. 

“The high prevalence of this olfactory disorder found in our study suggests the need for further studies of olfactory function in this disease,” concludes the authors. “It would also be of interest to carry out longitudinal studies to evaluate the response of hyperosmia to antibiotic pharmacotherapy.”

In my own unofficial Facebook poll, 86% of the 22 responders reported experiencing difficulties with smell after their Lyme disease diagnosis.

In contrast, a decreased sense of smell, hyposmia, has been described in patients diagnosed with Fibromyalgia. Fibromyalgia patients had “significantly lower thresholds of smell compared to healthy controls.” The investigators did not address hyperosmia.

Hyposmia was observed in 42 % patients with Fibromyalgia compared to 15 % of patients with systemic sclerosis and 4% of the healthy controls. “Our findings suggest that there is a decrease in the sense of smell both in Fibromyalgia and systemic sclerosis patients compared with healthy controls.”

Although having an altered ability to smell, whether lessened or heightened, may seem insignificant, these studies are a reminder of how vast the presentations can be in Lyme disease patients. And, how much more we still have to learn about this disease.


16 Replies to "What is that smell?"

  • Tyler
    12/28/2020 (6:12 am)
    Reply

    Two tests have come back negative, but on top of the fatigue, sleep-ruining joint issues, brain fog, and headaches, I’m CONSTANTLY wondering “what’s that smell?!” I stopped going to certain stores because their distinct smells were too overpowering (meanwhile, “how is no one else reacting to this?!”) and I’m INCESSANTLY sniffing around my house, trying to locate a couple of maddening smells. I used to Frebreeze the office before my overnight shift at a group home, and as a teacher, I would step out of my classroom to track down an odor (from the hall? a closet? the bathroom??) I’ve donated clothes that were washed in detergent I couldn’t stand–the smell just wouldn’t come out!–and now buy the one I CAN tolerate in bulk, in case it ever becomes unavailable.

    Maybe it’s an OCD thing. Maybe it’s fibromyalgia. But I swear it’s all undiagnosed Lyme disease.

    • Dr. Daniel Cameron
      12/28/2020 (7:29 am)
      Reply

      I typically advise my patients to consider Lyme disease if they have combination of fatigue, sleep issues, brain fog and headaches along with changes in smell. I have written a couple blogs on this topic. https://danielcameronmd.com/central-sensitization-syndrome-worsens-lyme-disease/ I also work with my patients to rule out other illnesses. Call my office at 914 666 4665 if you have any questions.

  • Kay
    09/04/2020 (6:06 am)
    Reply

    Hi, I haven’t been diagnosed with Lymes disease, though come to think of it, I’ve had lots of tick bites,
    I live in Australia.
    I linked to your website because of searching for hyperosmia , which I suffer from, a lot worse some
    times than others, I can smell washing powders on clothes on lines from quite far away from etc, it’s
    terrible, I makes it hard to breath sometimes.
    I do have an autoimmune disease which is ulcerative colitis, I take immune suppressive meds, this seems
    strange, what do you think?
    Curious, Kay

    • Dr. Daniel Cameron
      09/04/2020 (8:52 am)
      Reply

      I have not found much written on hyperosmia. I suspect it has to do with immune response. I wrote the Lyme disease science blog to encourage research in this area.

  • Tee
    07/01/2020 (12:23 pm)
    Reply

    Dear Dr. Cameron,
    I’ve been suffering with not only hyperosmia but also react to smells with rashes. If I smell something that is strong enough, I can literally feel this internally thus leaving me feeling sick, nauseous and then swollen. My face and hands both swell and then I slowly begin to feel itchy. It takes some time for this process to fully evolve as it is a delayed hypersensitivity, but it has such an impairment on my life that I cannot find the words. I have also been dx as a hypersensitive person, bone marrow “hypercellular” and sleep study revealed, “hypersomnia.” I’ve had multiple tests done for lyme, but I wonder if they’re missing something (doctors, labs)…Is this possible? I cannot take much more I feel like I am being eaten alive and bc I am ALWAYS in “hyper” mode…my body is physically exhausted. Are there other tests available…Studies? Anything? I am located in LI, NY…I so wish I was closer to you, I’d even been incline travel if someone/anyone can help. 🙁 thank you.

  • Christy Collett
    03/28/2019 (1:48 am)
    Reply

    To my knowledge do not have lyme disease but I taste smells and it is a curse.

  • Scott
    01/15/2019 (5:09 am)
    Reply

    Hello Ellen, I have had this smelling smoke issue for about 5 years, I recently found out that I had a tick borne illness for 10 years. I thought I was loosing it, and I guess I was in a way. I read that neurological issues can cause this problem! I finished the antibiotic treatment a couple months ago and still have neurological and neck issues, but my bp is back to normal and my low back issues are gone (hopefully) slowly but surely I hope to get back to 100%,

    • Carolina
      03/28/2021 (3:31 am)
      Reply

      You are describing myself. I am still taking the antibiotics and I hope to get better too. I got better in so many ways, but some, like neck and neurological ones are still all messed up… I found out I had lyme not long ago and the bite was back in 2008 or so. I have the same burning smell, specially at the tip of my fingers and didn’t understand it. Until now. Thank you doctor for writing this.

  • Ellen Kaye
    12/16/2018 (8:06 pm)
    Reply

    I developed hyperosmia. on September 27th 2018, immediately coming out of anesthesia for a full hysterectomy. From that moment to this day, December 16th 2018 I feel that my life has been ruined by this horrible situation. My doctor has me going for blood test tomorrow for Lyme disease. I I could not imagine how I could have contracted Lyme disease. Additionally I’ve never seen a tick on my body ever. Itruly believe I don’t have it but I do have many symptoms of Lyme disease. I truly believe I don’t have Lyme disease although I hope I do so that I can get rid of the Hyperosmia. I feel like I’m quarantined, and my husband who is blind cannot go out either without me and for the most part we don’t go anywhere except to see doctors. We are both young seventy-year-olds had a wonderful social life prior to this happening, and there are other side effects of my surgery that I won’t go into here. Additionally I have fibromyalgia from early in the 90s I also suffer from fatigue, joint pain, depression, osteoporosis, etc. When I first realized that I had this my surgeon said that it would take months for it to go away and then I asked him if he ever had a patient who developed Hyperosmia, and he said no. So I don’t know how he could know or even make a statement that it’ll go away after many months pretty much that’s what he said. I just cannot believe that I’m in this horrible position. And when I read is that more often men get it and it’s rare to have a heightened sense of smell its more common for loss of sense of smell which I would have much preferred acceptance of this has been very difficult for me. Acceptance of it has caused me to sob for hours on end for several days and I now have very dark circles under my eyes. My doctor said I need to rehydrate to help that go away. Does anyone else have dark circles under their eyes who knows what to do for this? I feel so bad for everyone who has to live with Hyperosmia! I read there are approximately 19 million known cases in throughout the World! I hope that everyone who’s reading this has a joyous, healthy & happy New Year! Bless us all and thank you for reading this.

    • Dr. Daniel Cameron
      12/17/2018 (4:12 pm)
      Reply

      Thanks for sharing how difficult hyperosmia can be. I wrote the Lyme disease science blog to remind doctors and their patients that a tick borne illness can be a cause.

  • Mary Jenkins
    12/03/2018 (1:57 am)
    Reply

    MARY. 12-2-2018
    I had Lyme’s disease and lost the ability to smell.. My doctor told me it’s a side effect of Lyme’s.

  • Sally
    08/13/2017 (9:17 am)
    Reply

    I have heightened sensee of smell since being bitten by ticks. The ELISA lyme tests are negative, but I had 3 bulls eye rashes. They wrongly diagnosed me with paranoid schizophrenia. I am now convinced I do have lyme disease 24 years later… late stage lyme, as recently lots of other symptoms are emerging. Thank you for posting this very important piece of information.

  • Shelly Wilson
    07/16/2015 (11:21 pm)
    Reply

    I have SLE and fibromyalgia and I have a heightened sense of smell. When I was able to work I had to ask co workers to limit their use of perfumes or lotions because I would literally stay nauseous all day long. It was very distracting working as an accountant as I was running to the restroom to vomit quite regularly.

  • Mimi
    06/26/2015 (2:23 pm)
    Reply

    FYI–due to the ravages of tick-borne disease–I am totally blind,hard-of-hearing, and have lost touch sensitivity in my fingers and feet. But–boy–I sure have developed an incredible sense of smell! With so much sensory deprivation in other areas, I find this heightened sensitivity to odors not a curse–but a blessing. Although I want to puke when I pass through the perfumed laundry section of the grocery store, my super smeller has saved my life in a variety of ways over the years of traveling up and down the Lyme road. Maybe the police and other officers of authority should hire me as a dog “sniffer.” (Smile!)

    Mimi

  • mimi
    06/26/2015 (2:12 pm)
    Reply

    

    FYI–due to the ravages of tick-borne disease–I am totally blind,hard-of-hearing, and have lost touch sensitivity in my fingers and feet. But–boy–I sure have developed an incredible sense of smell! With so much sensory deprivation in other areas, I find this heightened sensitivity to odors not a curse–but a blessing. Although I want to puke when I pass through the perfumed laundry section of the grocery store, my super smeller has saved my life in a variety of ways over the years of traveling up and down the Lyme road. Maybe the police and other officers of authority should hire me as a dog “sniffer.” (Smile!)

    Mimi

    “…just when the caterpillar thought her life was over she became a butterfly.”


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