Hair loss in Lyme disease – the last straw?

We thought we had enough problems with the discovery of chronic Lyme disease, Lyme encephalopathy, and neuropsychiatric Lyme disease. [1] Hair loss could be the last straw.

 

by Daniel J. Cameron, MD MPH

In a recent issue of the American Journal of Dermatopathology, Lynch and colleagues report on the case of a 21-year-old man who suffered hair loss following a tick bite to the scalp. [2] The man presented with nonscarring alopecia, a pattern of hair loss similar to alopecia-areata, also known as spot baldness.

Tick bite-induced nonscarring alopecia typically presents as patches, often described as “motheaten” or patients may have nodular, blood crusted lesions. According to the authors, symptoms include pain, pruritus or swelling. “There is usually a history of tick bite to affected areas, but lack of patient-reported tick attachment does not rule out this diagnosis.”

The patient’s nonscarring tick-borne alopecia was complicated by external trauma including hair pulling and lichen simplex chronicus, a condition of thick, leathery, brownish skin caused by chronic itching and scratching.

The nonscarring tick-borne alopecia was thought to be due to a robust host response. “Tick bite alopecia is a reported phenomenon that is thought to be caused by a robust host response to tick-injected saliva containing an anticoagulant and anti-inflammatory and immunomodulatory chemicals,” explains Lynch.

There is good news for nonscarring tick-borne alopecia. “Because few hair follicles are truly destroyed in this form of tick bite alopecia, hair regrowth is commonly observed, usually within 3 months; [3-5] however, alopecia has been reported to persist for 5 years after healing of local reaction to tick bites,” according to a series of four papers cited by Lynch. [6]

A scarring form of tick bite alopecia has also been described in Europe. “Tick-borne lymphadenopathy syndrome, classically transmitted by ticks of the genus Dermacentor and caused by Rickettsia slovaca infection, is an emerging entity typically seen in Europe,” according to Lynch. “Doxycycline remains the treatment of choice.”

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Generalized hair loss, as well, has been described in Lyme disease patients. [7] “Diffuse alopecia occurred within three months after the outbreak of disease in 3 out of 23 (13%) patients with Lyme meningitis and in 40 out of 71 (56.3%) patients with tick-borne encephalitis,” according to Cimperman from the University Medical Centre, Ljubljana, Slovenia. “The mean duration of alopecia was 2 to 3 months and alopecia was reversible in all patients.”

There are a number of causes of scarring and nonscarring alopecia including autoimmune conditions, such as lupus, diabetes and fibromyalgia. [8] Moreover, medications used to treat systemic autoimmune disease and fibromyalgia have also been associated with alopecia.

Hair loss can impair the quality of life of patients with systemic disease. “Patients in remission from their global systemic disease are often left with alopecia, which significantly impairs their self-esteem and interferes with their personal and professional lives,” according to Moghadam-Kia from the University of Pittsburgh Medical Center. “This situation is often not adequately recognized, and withdrawal from social and work functions often leads to or augments long-standing depression in the patient.”

“To the authors’ knowledge, this is the fifth report of nonscarring tick bite alopecia in the literature and the first in an adult patient,” writes Lynch. There are undoubtedly many more undocumented cases of Lyme disease patients suffering from not only generalized hair loss but from tick-borne alopecia. The authors are to be congratulated for bringing attention to an under-recognized medical condition which can greatly impact patients’ lives.

 

References:

1. Cameron DJ, Johnson LB, Maloney EL. Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease. Expert Rev Anti Infect Ther, 1-33 (2014).
2. Lynch MC, Milchak MA, Parnes H, Ioffreda MD. Tick Bite Alopecia: A Report and Review. Am J Dermatopathol, 38(11), e150-e153 (2016).
3. Ross MS, Friede H. Alopecia due to tick bite. AMA Arch Derm, 71(4), 524-525 (1955).
4. Heyl T. Tick bite alopecia. Clin Exp Dermatol, 7(5), 537-542 (1982).
5. Krinsky WL. Dermatoses associated with the bites of mites and ticks (Arthropoda: Acari). Int J Dermatol, 22(2), 75-91 (1983).
6. Raoult D, Lakos A, Fenollar F, Beytout J, Brouqui P, Fournier PE. Spotless rickettsiosis caused by Rickettsia slovaca and associated with Dermacentor ticks. Clin Infect Dis, 34(10), 1331-1336 (2002).
7. Cimperman J, Maraspin V, Lotric-Furlan S, Ruzic-Sabljic E, Avsic-Zupanc T, Strle F. Diffuse reversible alopecia in patients with Lyme meningitis and tick-borne encephalitis. Wien Klin Wochenschr, 111(22-23), 976-977 (1999).
8. Moghadam-Kia S, Franks AG, Jr. Autoimmune disease and hair loss. Dermatol Clin, 31(1), 75-91 (2013).


36 Replies to "Hair loss in Lyme disease – the last straw?"

  • Mary
    03/15/2021 (8:12 pm)
    Reply

    I came on this site because I have been losing a lot of hair. I was newly diagnosed with Lyme disease. That’s a horrible disease. I already have RSD, diabetes type 2,COPD, chronic kidney disease, and now Lyme disease. I didn’t need a new medical problem but here I am. I’ve been having a hard time. It seems like this is effecting all the other diseases. I have a horrible rash that used to itch but now I just have scabs and more scars. I thought it was just my Rsd flaring but it’s never gotten this out of control since I 1st got it. My primary took the test for Lyme and he told me I was positive and that he needs to get an appointment with the infection control Dr. Set up for me. I started taking biotin for my hair loss. I’m still losing hair but not in chunks anymore. I hurt all over. It kept me up all night. I’m 62 and in a wheelchair from botched hip replacement and the other hip I got Mrsa in it so now I don’t have a hip. I can’t walk anymore. I’m over 150 lbs too heavy. I have never weighed this much. I don’t know what I’m doing with this disease. I’m tired all the time, no ambition at all. I’m scared

    • Dr. Daniel Cameron
      03/16/2021 (9:57 am)
      Reply

      I have patients with multiple medical problems where it is difficult to know if Lyme disease is a part of the story. I sometimes find treatment for a tick borne helpful, yet they still have the other conditions to address. Some of my patients have dermatology and hair issues. Occasionally I have had patients who fall into a Morgellons like pattern.

  • Traci C Pens
    10/05/2020 (5:07 pm)
    Reply

    Dr. Daniel Cameron bless you for putting out information on Lyme Disease. For the past 2 years my family has thought that i was crazy or on drugs. 3 of my older children do not associate with me. My marriage is on the rocks. I have not been tested however, for the 1st time in 2 years i have hope. I have searched for every symptom online to no avail until now. I too have alopecia. Exactly as stated by Patricia 11/24/17. I have a few questions and some experiences to share. I am ordering a home test for Lyme Disease, are the results of at home tests accurate? I have read that Lyme Disease or some of the Stage 3 forms of the Disease are not accepted as medical conditions by the CDC. It this true or is the information outdated? If it is true, are treatments for Lyme Disease or Chronic Lyme Disease covered by insurance such as Medicaid? And are there certain Dr.s that i would need to see for treatment as well. From my experiences my alopecia has been caused by something in my hands. This is also one indication to me that i have Lyme Disease. I would love to share my experiences with you as I agree research is needed. Thank you, this information just may have saved my life. I have also been depressed and suicidal at times through out all of this.

    • Dr. Daniel Cameron
      10/05/2020 (7:09 pm)
      Reply

      There are so many causes of alopecia. I have an occasional patient with alopecia but typically have a number of other symptoms. There is also uncertainty around the existence and cause of Morgellons disease. I am aware of a doctor who takes Medicaid for a Lyme disease evaluation.

    • Mabel Del rio
      08/12/2021 (2:21 pm)
      Reply

      Hi, all thank you for sharing such stories. I had the Covid and to learn I also had Lyme disease. They gave me antibiotics and send me on my way. Now I am having lots of hair loss that I can build a wig. I also am very tired and can’t stay awake and I have no kind of energy. My bones hurt especially at night when it’s time to go to bed is the worst. My blood show I had the Lyme disease but it’s not strong anymore, but why am I having so much pain in my body and so tired!! I was a hard working 80 to 90 hours per week and now I can not work at all

      • Dr. Daniel Cameron
        08/12/2021 (8:05 pm)
        Reply

        I have not found a test I am comfortable with that can confirm that Lyme disease has resolved. I advise my patients who have persistent symptoms to be reevaluated.

  • Rhita
    08/04/2020 (3:05 pm)
    Reply

    Hi,
    I know how it feels to have once hair fall out by the bushels. 2 things helped me to stop the hair loss during my Lyme journey. # 1: it was established that I was low on Testosteron. Yes even as a woman you require Testosteron for vitality. That was mitigated by taking 7mg of DHEA daily (absolutely not more for the ladies). # 2: I washed my hair every other day then prepared a tincture of 2 table spoons of extra virgin olive Oil with 7 drops of tea tree oil and 3 drops of clove essential oil. I massaged it into the scalp and left it in over a couple of hours or over night and washed it again. Within a week my hair stopped falling out. I was ecstatic!!!! My hair is growing back too. Start with # 2. It may do the trick for you on its own.

  • Lorraine
    06/14/2019 (3:09 am)
    Reply

    Any doctor now adays that doesn’t look for Lyme disease in my book is a idiot & if it was the doc or a loved one the story would be different

  • Claudia
    05/20/2019 (9:04 am)
    Reply

    I’ve gone to the doctors for all the symptoms and my nurse practitioner said your fine you don’t have a fever no more. I told her its because my appointment was scheduled 3 almost 4 weeks after. And this was 2 year ago. I had noticed my hair loss to and she said “you have to lose weight” and gave me some ibuprofen for my pain in my joints and migraines. Not till last summer when i noticed my heart felt like it was skipping a beat and i started feeling weak and any kind of hit or accidental bump is pain like no other. And two days ago my son tells me ” oh mom your really going bald.” I also noticed my nail beds are turning white. I still haven’t been diagnosed but whatever i have is taking a toll on me because i get thoughts of wanting to hurt myself and have became very grumpy and moody. It’s gotten to the point where i don’t want to be out in public. What scares me the most is my son had bald spots and they are back.and he complains about joint pain but they say its growing pains.

    • Dr. Daniel Cameron
      05/21/2019 (12:11 am)
      Reply

      There are so many causes of hair loss to consider. I typically do not look for Lyme disease unless there are other findings.

  • Sue
    01/23/2019 (5:22 pm)
    Reply

    Finally on meds for lymes again but this time my hair is falling out I’m a hairdresser so it’s really scary. And my skin is so dry it’s been off and on since 2009 and it’s hard to find a doctor who knows about lymes. We live in a hot bed for lymes

  • Virginia Smith
    12/15/2018 (2:15 pm)
    Reply

    Could ehrlicia cause hair loss too? I was hospitalized, they put me on doxycycline, all the high fevers slowly went away. CBD oil helped my leg pain. But hair started coming out in droves. I had extremely thick hair but at this rate I’m terrified I’m going bald. Any suggestions!

    • Dr. Daniel Cameron
      12/15/2018 (11:11 pm)
      Reply

      We do not understand hair loss. I have seen hair loss in my patients if they have not cleared their illness.

  • Daniel
    07/02/2018 (3:30 pm)
    Reply

    I had what they call from a tick babesiosis and noticed after out of the hospital I started losing hair not in patches but coming out like crazy everywhere not just on the top or sides but even in the back is this something that will stop eventually I’ve been out of the hospital since May 1st

  • Carrie
    03/15/2018 (12:39 am)
    Reply

    Dr Caneron , my now 9 year old son was diagnosed with Lyme 6 years ago. I feel he’s never truly recovered. One year ago he lost a patch of hair. Classic Alopecia areata patch. It grew back after putting him on anti inflammatory diet. He asked to be put back on a “normal “ diet after. About 4 months ago. Any recommendations ? Do you feel anti inflammatory diet helps?

    • Dr. Daniel Cameron
      03/15/2018 (1:37 am)
      Reply

      Sorry to hear your son is loosing patches of hair. The article I reviewed added a tick borne illness as a consideration. Hair loss is rather complicated. The article I reviewed did not offer any suggestions.

  • Mark
    03/07/2018 (4:36 pm)
    Reply

    I too am in that fuzzy Lyme world. I tested positive through Igenex but most Canadian Doctors wont recognize the test as it doesnt meed CDC criteria. I had my first case of Alopecia in 1991 at the bottom of my hair line behind my ear. I have had patches come and go over the years but no doctor could tell me why. My arthritis started in my back but moved into all my joints in 2009. Last spring i found a test for SIBO and discovered i had a severe case….research on SIBO led me to a huge link with LYME….Finally last Fall i finally got diagnosed with Lyme….its a long slow battle.

    • Dr. Daniel Cameron
      03/07/2018 (7:18 pm)
      Reply

      Thanks for sharing your journeyl

  • Brian
    02/07/2018 (7:15 pm)
    Reply

    shit. Excuse my language, but I’m realizing there’s a good chance I’m infected. Got every classic sign. I’m punching that tick in the face now for sure.

  • Patricia
    11/24/2017 (3:04 am)
    Reply

    I had lyme disease for awhile and didn’t know I had it , after several years I started with the fevers and aches all over. After many trips to all different Dr’s including a neurologist 3 infection disease Dr’s and being told it wasn’t lyme, I had a spinal tap. That came back positive , I had it in my brain. Couldn’t drive because I couldn’t find my way home . Leave the refrigerator door open . Lots of pain. After oral meds and a picline that almost took out my gallbladder , it’s been 6 years now . I have arthritis and the hair inthe back of my head and right side of my head is not growing and I’m going bald . The left side of my head grows anf looks normal. But now I either have to get a very very short hair cut or shave it all and get a wig. I’ll be 47 next month. And although I am very thankful to be alive it is depressing everday of my life now. My husband loves me regardless. Is there anything I can do or a cure for this ?

    • Dr. Daniel Cameron
      12/02/2017 (1:56 am)
      Reply

      Sorry to hear you still have symptoms and hair loss. The article I reviewed did not address your question. I am not a dermatologist. I am not sure there is any answer.

      • Dustin r Stout
        02/05/2021 (8:31 pm)
        Reply

        My wife is having some patchy hair loss and she keeps messing with it the infect area now she has not left the house in months and it is causing depression we just need to know what the first step is to getting treated and if some one could leave ok at a picture and tell us what it is please email me back because we don’t have no insurance to get to a family doctor.

        • Dr. Daniel Cameron
          02/06/2021 (7:29 am)
          Reply

          I have not been able to determine the cause of a patchy hair loss from a picture. There are so many causes for patchy hair loss. I shared the published paper in a blog to remind doctors to include an evaluation for Lyme disease if there are other issues.

  • Patrick
    06/14/2017 (8:09 am)
    Reply

    Had alopecia totalasis ( all head and body hair ) for about 14 years only diagnosed with Lyme a year ago and was diagnosed with M/E before that, obviously probably Lyme all along but hair loss one of the early symptoms.

  • Robert menchaca
    04/17/2017 (1:15 pm)
    Reply

    My son has had significant hair loss since suffering from a tick bite on his head. What tests should I ask for and is it reversible?

    • Dr. Daniel Cameron
      04/18/2017 (1:00 am)
      Reply

      The literature is sparse on the subject. The generalized hair loss may reflect the stress of the tick borne illness. It would be helpful to treat for Lyme disease if present. It would also be helpful to work with a dermatologist.

  • Marla Mackey
    03/16/2017 (12:47 am)
    Reply

    Dr. Daniel Cameron, after almost 15 years of severe leg pain , fatigue, odd sensations of being covered in spider webs and a long list of other symptoms, I have recently been diagnosed with Lyme disease. With all of my research , this is the first time I have heard someone address the “hair pulling” associated with the hair loss and Lyme disease. As if the other symptoms were not enough but the hair loss and overwhelming urge to constantly pull my hair is about to make me crazy. I cannot find any doctors here in Arkansas. Please help. I feel I am slowly waisting away.

    • Dr. Daniel Cameron
      03/16/2017 (11:33 pm)
      Reply

      I am encouraged when doctors from different specialties include Lyme disease in their discussion. You may want to check with the Global Lyme Alliance for names.

  • Alberta gozikowski
    12/22/2016 (2:37 pm)
    Reply

    My husband is positive for Lyme….had blood work and western blot.severe symptoms.extreme pain in legs.has been affected by the 3 months of doxycycline but managed to get thru it.age 70 probably misdiagnosed for over 3 years even tho we took tics to dcitir….because the mindset is non belief. you were recommended by our pharmacist as they next step.5706654161

  • Amy King
    12/18/2016 (9:41 pm)
    Reply

    I had been struggling for at least the last 3 months with symptoms of Lyme disease but didn’t know what it was from. I had many tests done, including bone marrow, but nothing came up. I went to my primary doctor in desperation last week and he ordered a few tests including a Lyme disease test. The line came up positive but they would not readily treat me until they got the Western blot back. I complained so they gave me some antibiotics but when the Western blot came back negative the Dr said I do not have Lyme even though my symptoms are almost identical. I understand it could be something else but I have been tested for lupus a couple years ago and it was negative. Plus my symptoms only kind of match Lupus whereas they pretty much identical to Lyme disease. I push to get antibiotics or continue with another doctor?

    • Dr. Daniel Cameron
      12/18/2016 (10:37 pm)
      Reply

      The two tier criteria required a positive ELISA and Western blot. Doctors are divided over whether to use clinical judgment for patients who are not positive by the CDC’s two tier diagnostic criteria.

      • Judy
        06/16/2017 (1:29 am)
        Reply

        That lack of clinical diagnosis violates the principle of “Do No Harm”. The ones that are scared end up doing harm. My doctor is a scared one. I guess they have to obey the head of the practice as well as their own conscience. Surely they can see not being able to walk properly. Yes, getting things off my chest.

    • megAN
      06/17/2017 (2:42 pm)
      Reply

      pls pls pls find another dr. it sounds 100% you have lyme. Tests are unreliable at best. Igenx you will get accurate test but a mainstream dr most likely wont use it, so find dr who will. You gotta dig.

  • Gretchen
    12/09/2016 (7:56 pm)
    Reply

    Glad to see an article addressing Lyme related Alopecia. As a 28 year old woman dealing with not just Lyme disease but now also losing a majority of my hair due to alopecia that the Lyme triggered; it has been a very difficult journey learning to accept the unexpected changes that both have brought to my life. Unlike in the article though my tick bite was not on my scalp but rather on my leg and the alopecia didn’t actually develop for 2 years after. I have now been dealing with worsening alopecia hair loss for the last year despite ongoing Lyme treatment. I would be more than happy to provide any additonal information about my case if any more research is needed regarding this topic.

    • Dr. Daniel Cameron
      12/10/2016 (7:24 pm)
      Reply

      I was happy to hear a discussion of his all important topic in the literature. Thanks for sharing your story.


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