Lyme disease patients struggle with depression

There is growing evidence that Lyme disease can lead to psychiatric symptoms, including anxiety disorders and depression. There have been cases where chronically ill Lyme disease patients were suicidal. But, whether psychiatric manifestations, including suicidal ideation, are due to an infection or the result of struggling with a debilitating condition is unknown.

One study found that more than 1/3 of patients with chronic neurologic Lyme disease suffered from depression, in addition to fatigue, headaches, poor concentration, lightheadedness, and joint pain.

While depression is not uncommon in patients with chronic illness, it does seem to be more prevalent among patients with Lyme disease, according to Dr. Robert Bransfield, a New Jersey-based psychiatrist, who specializes in treating tick-borne disease infections.

“In my database, depression is the most common psychiatric syndrome associated with late stage Lyme dis­ease,” states Dr. Bransfield in his paper “Lyme Disease, Depression and Suicide.”

Individuals with Lyme disease may also find themselves subject to the same stigma described for depression. The reluctance of some clinicians to acknowledge the existence and severity of any thing more than an acute disease only fuels the stigma.

The national conversation on depression reminds us of the need to remove barriers for Lyme disease patients who are already feeling overwhelmed and stigmatized.


35 Replies to "Lyme disease patients struggle with depression"

  • Gill mahoney
    04/06/2020 (1:01 pm)
    Reply

    I have been ill a year and half starting with what felt like flu, but it didnt go away, i am so weak and tired get virtigo, vague nausea feel ill but most of all very severe depression and anxiety and panics all of which I keep under control with 10mg opiate which is the only thing that helps depagos. I am 80% bedridden and have poor concentration and brain fog and a body temperature of 34 d at best. Hardly a day goes by without me wishing I was dead. We lost our home in a fire and in temperary accommodation but once we are settled somewhere I am going to take disulfiram which I have heard cures it. I had doxicycline five weeks with 50% physical imprvement and severe herx. No antidepressant has an effect. What do you think of disulfiram?

    • Dr. Daniel Cameron
      04/07/2020 (6:50 pm)
      Reply

      I have treated longer or changed to another antibiotic in patients with similar findings before considering disulfiram.

  • Alex
    02/10/2020 (6:46 pm)
    Reply

    I had Lymes disease for 3 years undiagnosed when I was only 8 years old. I didn’t know that it wasn’t normal to feel so tired and aching until my family started to notice and I had two rounds of antibiotics. I was always told to keep in mind that I had Lymes disease because it never really leaves. Years later I am almost twenty years old and have suffered from anxiety and depression. I also feel aches every so often that I used to think were growing pains but I’m definitely done growing. I’ve felt slight brain fog before and difficulty remembering words. I wonder if this is linked to Lymes disease and if somehow might still have symptoms. Is this normal?

    • Dr. Daniel Cameron
      02/10/2020 (7:36 pm)
      Reply

      Your story is all too common. You should consider being evaluated by a doctor experienced in treating Lyme disease.

  • Kim
    01/12/2020 (9:27 am)
    Reply

    Years ago, while in living in the Northeast, I experienced a spontaneous rash, with an extremely high fever. I didn’t seek medical treatment, as the symptoms went away (or so I thought) and, at the time, I was uninformed in regards to Lyme Disease. Shortly afterwards, I was involved in a car accident, in which I sustained neck injuries. From that time on, I became extremely fatigued, as it felt as though no amount of sleep was enough. I complained of being overly tired and overly achy for someone in their late 20’s. (I wasn’t on any medication of any kind, either, so it wasn’t a side effect of anything new.) I also began experiencing strange heart issues, as I would have chest pains and would feel that my heart was out of rhythm. I began having continual headaches — all of which I had originally linked only to the neck injuries from the accident. I then began having memory/ concentration issues, which had concerned me so much that I requested that my neurologist do an MRI on my brain to make sure that I had not sustained a brain I injury during the previous wreck. I had never experienced “brain fog” like that before. I had just completed a BS degree and became increasingly frustrated in how my concentration abilities had changed overnight, it seemed. I became depressed and kept telling everyone that something”was not right with my body,” neither physically nor mentally, as I had noticed significant changes. I began having anxiety, and my mood would fluctuate. Overall, it was as though I’d gone from someone in their late 20’s to someone much, much older, over the course of months, rather than years. After hearing of how prevalent Lyme Disease was in that area and of its symptoms, I recently had bloodwork done out of curiosity, which revealed that I had, in fact, been exposed to Lyme Disease at one point in my life. As I had never been treated for it, I was told that my body has fought it off naturally over the course of time. I still experience the “symptoms” of feeling fatigued, achy, and frustrated with concentration/ focus issues. And, I still deal with anxiety and depression. It has been a very frustrating experience, to say the least. Perhaps the most frustrating part has been not knowing what has been wrong all along. What course of action, if any, should I take at this point in regards to treatment? (I’m already scheduled for an appointment with a cardiologist to check out what’s been going on with my heart, either way.) I sympathize with everyone here and wish you all the best.

    • Dr. Daniel Cameron
      01/12/2020 (9:49 am)
      Reply

      I have seen patients who are not aware they have Lyme disease until they have been stressed by a Motor Vehicle Accident. A positive IgG test shows exposure. It does not mean the infection is over. I have Lyme disease patients in my practice where the IgG is positive but the infection is not over.

  • M Cook
    01/09/2020 (6:57 pm)
    Reply

    I’m recently diagnosed with lyme disease and reading this blog has brought me to tears
    I wasn’t as depressed as I am even when I was in prison or homeless when I was released I’m a single father of an amazing wonderful 2 year old and I just want to die I didn’t know what was wrong with me but reading this every symptom makes sense. I’ve made my concerns about my depression known to family members and they don’t seem to believe that I am unable to ‘get back up’ I need help

    • Dr. Daniel Cameron
      01/10/2020 (9:09 am)
      Reply

      I have patients in my practice who have gone through a lot. My patients often hear conflicting opinions. Keep working on getting better.

  • Patrick
    02/09/2019 (11:18 am)
    Reply

    Beginning in 2004, I had very severe neuroborreliosis that went undiagnosed for a year. I wanted to die. I was wandering around like a zombie. I went to bed every day hoping I would never wake up. When I did wake up, I was overwhelmed with sadness and my eyes would fill with tears. I had a dream job but I couldn’t even enjoy it. Then the physician did a spinal tap and started me on 40 days of intravenous antibiotics. The arthritis went away, and the shooting pains and pins and needles lessened, but the fatigue and mental fog and pessimism and negativity have never gone away. I am completely unable to handle stress, and I have to sleep 10 hours a day. Now, 15 years later, I still feel like I am 95 years old and should have died long ago. I feel older than my parents. I just want to die. I was lucky enough to have a Lyme literate psychiatrist who helped me reduce my life to something I could manage. Other people can’t understand what happened to me, and gradually most of my friends and colleagues wrote me off as a complainer, a malingerer, a loafer, a moocher, as no fun at all. I don’t blame them at all. I am poor now but I can handle it. I just want it to stop, the fatigue, the pain. Once my parents die I will get some opioids and end this.

    • Dr. Daniel Cameron
      02/11/2019 (12:24 am)
      Reply

      Your story is all too common. You might benefit from a second look at a tick borne illness. IV Rocephin does not work for several of the co-infections. There are oral antibiotics that are effective for other co-infections. You should also rule out other illnesses.

  • Jeff
    07/23/2018 (5:46 pm)
    Reply

    Dr. Cameron, it is likely I had Lyme for 35, or so years before it was found. Do you believe long term Lyme can cause damage, or changes in brain chemistry? If so, what treatments or remedies would you suggest looking at? I figure my profound fatigue is part brain chemistry, and part mitochondria (every cell in my body feels overtaxed much of the time). I went through weeks of antibiotics last year, but it made no difference. Thanks for your advocacy!

    • Dr. Daniel Cameron
      07/24/2018 (12:08 am)
      Reply

      There are a lot of changes that take place during a tick borne illness. I have included science blogs addressing ophthalmology issues to better understand the problems my patients face. There are a growing number of professionals looking at tick borne issues including mitochondria. I cannot comment on whether there were any antibiotic treatment regimens that were overlooked e.g. Babesia without an evaluation.

    • Dr. Daniel Cameron
      07/24/2018 (12:11 am)
      Reply

      There are a growing number of professionals taking an interest in the changes that occur with tick borne illnesses. I cannot comment on whether there were any treatment regimens overlooked e.g. for Babesia, without an evaluation.

  • B Better
    11/25/2017 (12:19 pm)
    Reply

    I was diagnosed with late stage lyme after 12 years of suffering. My general practitioner just told me he was informed that lyme wasn’t in our state! I live in Georgia. I am better, due to working with a lyme specialist and a neurologulist, that put me on 400 mg of CoQ10 and S.O.D.3, 3 times a day, as well as massive amounts of great probiotics. The coq10 and sod3 help rid the body of free radicals in the blood and has worked wonders. I still have issues, but it’s a good start. Depression for people with Lyme is real though.

    • Dr. Daniel Cameron
      12/02/2017 (1:54 am)
      Reply

      Lyme disease has increasingly reported in the Southern United States. You should consult a physician familiar with treatment for Lyme disease beyond supplements if you are still ill.

    • S Garner
      05/03/2018 (5:24 am)
      Reply

      I am in Georgia as well. Physicians don’t know how to treat it nor us. Now I am out of money and rarely working. My life has radically changed…

      • Dr. Daniel Cameron
        05/03/2018 (2:08 pm)
        Reply

        We need more doctor to take on the challenges of Lyme and tick borne illnesses in the South.

    • Laura
      03/16/2020 (3:54 pm)
      Reply

      Hi!
      What were ur exact symptoms?
      I’m wondering if I need a. Neurologist as well.
      Definitely hitting my central nervous system and brain fog plus other tingling twitching sensations and very anxious feelings. Thank you.

  • Elzanne
    07/12/2017 (5:57 pm)
    Reply

    I got Lyme disease in October of 2016. Successful disgnosed & treated after I worked & suffer for more than a week… i was pretty sick but it after several days of Doxy I was back up to speed. My problem is that I seem to have lost my ZEST. It could be cause I work a high stressed job & long hours but I’ve done this for many years. I am alot less approachable, easy to aggitate, easily worked up & always worried about something – get headaches now (have never been a sufferer) – I drink copious amounts if water at night & often wake up at night being unable to go back to sleep (I have never had trouble before & this seems to be increasing) I am grabbing at straws – I no longer recognise myself but am urnestly looking for a possible reason for my ‘changes’ – am pretty convinced it’s medical (I know myself) – I am no hypochondriac & consider myself to be healthy…. any thoughts would be greatly appreciated

    • Dr. Daniel Cameron
      07/12/2017 (6:39 pm)
      Reply

      Up to a third of patients can suffer from fatigue, poor sleep with frequent wakening, poor concentration, sleep issues, and variable moods. Doctors are divided on how to whether to treat or not to treat. The doctor might see the psychiatric rather than the entire clinical picture. You may need to include a doctor who works with tick borne illnesses for a reassessment.

  • Betty Gordon
    04/07/2017 (8:05 am)
    Reply

    Dan,
    My late husband, Jack Gordon’s brain autopsy given to me 11.22.15 by Dr. Alan MacDonald said:

    Jack’s brain made WORLDWIDE HISTORY having 2 diseases never discovered together before:

    Borrelia/Lyme and
    LEWY body dementia causing visual/VIOLENT hallucinations like Robin Willams had.

    Because Jack is the 1st in world with these diagnosis, his case will be written up and published in an unknown SCIENTIFIC medical journal sometime in future!!

    I, non-medical person, will be 1st co-author over him, Paula Pierce from Norman, Okla. EXCALIBUR LAB did the 1st work on blood staining before Alan received the slides.

    Then Tom Grier was to summarize everyone’s findings into the case with Alan adding the finale comments!

    Alan retired before he got his part was done in 2016. I got my part done within 2 wks. of that call before my knee replacement surgery.

    They also found a filarial nematode parasitic worm in his brain. When cutting the worm in half, worm had LYME DISEASE TOO!

    They made 3 major finds in Jack’s brain.

    Jack NEVER suffered from depression or other symptoms mentioned above; he did have SEVERE knee arthritic pain and in his hands/fingers terribly!

    Using Jack’s medical records, I went back 35 years to when he got terribly sick and was home for almost 4 full WEEKS! He was never sick more than 2-3 days max with a cold.

    Last 2 years was when the HALLUCINATIONS started mild at 1st and then progressed to where he’d wake up screaming loudly “someone was trying to KILL him” and he was never in war deployed!!

    Jack was never diagnosed in 35 years with his Lyme disease!! He broke out in heavy sweats just walking across the 8′-10′ kitchen area.

    Neurologist he’d doctored with for 5 years NEVER diagnosed him with his LEWY body dementia in spite of my telling him over & over how the hallucinations progressed to violent ones!!

    Paul Duray Research Foundation brain autopsy slides of:

    Lewy body dementia, Alzheimer’s, Lyme disease, Glioblastoma, and Parkinson’s can found here:

    https://durayresearch.wordpress.com/our-work/lewy-body-dementia-a-global-theory-of-neurodegenerative-disease/

    Jack’s and my Lyme stories can be found at the bottom of the link above this paragraph.

    Alan would have loved to have been able to study Robin Williams blood staining slides to see if he also had LYME disease as well as the LEWY body dementia.

    Betty Gordon
    Iowa Lyme/LEWY body dementia widow
    48 yrs. chronic Lyme patient,
    35 yrs. MISDIAGNOSED by 40-50 drs, unacceptable!

  • Sandra
    03/15/2017 (11:33 pm)
    Reply

    Can someone please help me? My precious daughter age 20 has late stage Lyme disease. She has been through IV antibiotics and seems to be better physically but mentally she deals with great depression, rage, and concentration. She is taking Abilify and Zoloft. She wants to end her life. She asks if she can please end her life. She spent all of her teen years ill. She can’t drive, go to school or work and is seeking street drugs to manage her depression. I just don’t know how to help her.

    • Dr. Daniel Cameron
      03/16/2017 (11:34 pm)
      Reply

      It can be difficult to get better. Keep working with her to find a solution.

    • Jenn
      04/12/2017 (1:15 pm)
      Reply

      I have late-stage Lyme as well. Please don’t give up on her. Make sure she has a Lyme-literate doctor, not just a family practice physician. Not all docs have experience treating Lyme, and some aren’t up-to-date on the best treatments. A support group may also be helpful– it’s hard to say. If she’s unable to drive or work and is mostly confined to the house, she may need to get out for a bit, which can be so hard to do but makes a big difference for me. Time away from her normal environment with someone who understands can be validating for a person with chronic illness, and that validation, that connection, can be so important. I hope she finds some relief and some hope soon. I know how hard this is on the entire family.

    • Fran
      04/23/2017 (4:14 pm)
      Reply

      Hi Sandra,
      I feel for you and your daughter. I have Lyme disease and have been suffering from severe treatment resistant depression for 3 years. I understand how she feels when she asks please if she can just be permitted to die. I am a mother of 4 beautiful kids, have a kind supportive husband, but have lived in hell for the past three years. The Lyme has destroyed my brain and I can’t do most of what I used to be able to do. I still try with whatever energy I have left to stay alive for my children but each day I am like her, I just want to die. I too don’t know what to do but I pray a lot and I hope one day that your beautiful daughter can be healed. I can’t offer much help to you other than to say you are not alone. Please tell her this. I will pray for her too.

    • Anne
      09/15/2017 (10:43 am)
      Reply

      My daughter was where your daughter is. She still suffers from anxiety but we’re slowly making strides. The one medication that worked wonders is clozapine. However, she does have to go for blood work every two weeks (weekly in the beginning ). You may want to look into that. Also, a mental health facility for a few weeks might help. It’s a place she can be safe from herself and can be heard. Check around and check your insurance. Prayers to you and your daughter.

      • ilana drucker
        12/26/2018 (2:49 am)
        Reply

        Do you have any facilities to recommend?

        • Dr. Daniel Cameron
          01/01/2019 (1:03 pm)
          Reply

          Call my office at 914 666 4665 if you we can help.

    • Trish
      02/18/2018 (3:11 pm)
      Reply

      May I ask how your daughter is doing?

      • Dr. Daniel Cameron
        02/18/2018 (4:01 pm)
        Reply

        much better

  • Nancy
    03/14/2017 (3:13 am)
    Reply

    Can depression in patients with Lyme disease be diagnosed with ICD10 code F06.31 for mental health counseling?

    • Dr. Daniel Cameron
      03/14/2017 (6:17 am)
      Reply

      The 2017 ICD-10-CM Diagnosis Code F06.31 has been introduced for “Mood disorder due to known physiological condition with depressive features.” Our office does not have any experience using the code, yet.

  • Dale Ann
    08/18/2015 (11:25 pm)
    Reply

    I was diagnosed with Lyme disease about 3 weeks ago. I was prescibed amoxil for 10 days and I’m now taking doxycycline since I’m still symptomatic. As the days go on I am feeling better physically with fewer headaches, body aches and neck pain but I am noticing more and more depression, trouble concentrating and focusing. I was diagnosed at the ER since I don’t have a primary care Dr. Should I return to the ER for a follow up? Or can I anticipated these newer symptoms to subside as well?
    Thanks!

    • brian
      01/10/2018 (10:49 pm)
      Reply

      get a spinal tap to make sure its not in your nervous system

      • Dr. Daniel Cameron
        01/14/2018 (6:54 am)
        Reply

        Only 2 of 27 chronic neurologic patients in the classic 1990 patient by Logigian and colleague in the New England Journal of Medicine were abnormal by spinal tap. Clinical judgement was necessary for the other 25 patients.


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