Lyme Question: Does Lyme Disease Cause Anxiety or Panic Attacks?


Does Lyme Disease Cause Anxiety or Panic Attacks?

My Personal Experience:
By Lisa Hilton

My first symptom of Lyme disease was possibly a panic attack. I was at a mall with a friend and our kids when my heart started beating funny. I just felt this pressure come about my chest and didn’t feel right. That was the first time I ever felt anything other then normal. The very beginning of this “Lyme journey.” it was 1991.

I really thought I was having a heart attack. My friend took me to the emergency room. I was hooked up to monitors but soon doctors told me everything was healthy other then I might possibly have mitral valve prolapse and had a “hard pressure in my arteries.” I still do not know what that means til this day.

Anyways the diagnosis of that day was, panic attacks. I never felt normal again after that day. That “weird” feeling never quite went away, even twenty years later I sill have it daily, just some days are worse. Sometimes I just have a generalized anxiety and my heart races and I feel like I’m crawling out of my skin. Other days, I have full on attacks out of the middle of nowhere. I can be sitting here just reading the computer and bam, my heart beats funny, my head feels all weird, I want to jump up and scream and run and I just want to feel normal, but can’t.

I want to note that my first panic attack happened on a day that I found out my son had to have open heart surgery. He was four. I am not sure til this day the connection between stress, Lyme and anxiety or what brought out which first. I do believe they worked synergistically to bring each other out.

How has it Affected my Life?

Honestly it was one of the most debilitating symptoms for me. Twice in my life I have not left my house for more then a year at all other then for doctor appointments. I had to have everyone shop for me, I lost all friendships and became very agoraphobic. I didn’t want to stay home. I just felt like if I left the house I would always have another attack. And leaving was just hard because I just didn’t ever feel normal anymore. I had a poisoned feeling all the time. I stopped working, stopped being a Brownie leader, stopped volunteering at my kid’s schools, stopped going places with my husband, and basically stopped everything that couldn’t be done inside of my own house. Sometimes I would just lay in bed with the blankets over my head.

I would go on long stretches of visiting the ER several times a day. Only Valium and Ativan would help me “feel normal.” I lost friends, jobs and my marriage to this. I felt like I was crazy. How could I feel so bad all the time but nothing be wrong. I joined a panic disorder group, (where I did learn some good breathing techniques), but didn’t quite fit in as everyone else just had “attacks” that would last a couple minutes then they could go on with their days. Mine never seemed to end, for years.

Eventually after a couple of bad reactions to meds, I started having panic attacks when I had to start any new meds. I pretty much now have a complete phobia to starting a new medicine or getting any medical procedure done, especially if it requires anesthesia. Even starting a new supplement scares me so badly I can’t tell if I’m having a bad side affect, herxing or just having a panic attack. Doctors just love this. (Sarcasm intended)

The Bad Part of having Panic Attacks if you have Lyme Disease

The diagnoses of panic disorder and generalized anxiety disorder can be a dangerous label to have. My doctors now are pretty comfortable blaming everything on panic attacks or anxiety. When I got all my medical records sent to me I was shocked that no matter what a test showed, no matter what my symptoms were on my visit, the doctor almost inevitably put the diagnosis down as, “another panic attack.”

I had a year long period of my arm going numb in which doctors kept blaming panic attacks, saying I was hyperventilating. One nurse accuses me outright of lying. Later an EMF finally ordered by a neurologist showed that I have 3 bulging discs in my neck pressing on nerves, leading the the numbness in my arm as well as Carpal Tunnel Syndrome.

Another time a doctor blamed panic attacks for my abdominal pain. To this day it is still in my charts that I was being seen for a panic attack even though I had been there for a stomach ache and my urine test showed bacteria and blood in my urine.

Once you have been labeled with panic attacks, I feel as if my doctors have been lazy and just wanting to blame everything on this disorder. Maybe that is why it took fifteen long years to finally get my first Lyme test? Which came back positive.

I think the thing that bugs me the worse is that panic attacks have such stigma to them. We have all heard, just go for a walk, drink a glass of water, just get out  more! All the dumb advice like it would ever be that easy.

My wishes are that someone is studying this. There is a physical reason panic attacks happen, it is not “just all in your head.” You can’t think it away. There is some body system that triggers this, and in Lyme patients seems to happen a lot. Is it POTS, a damaged autonomic system, or a messed up sympathetic system, some type of seizures we don’t understand or issues with your vasovagal nerve? I don’t know. I just hope someone is out there trying to figure it out.

So that is a quick version of my story with panic disorder and generalized anxiety disorder. Please share yours below to!

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4 thoughts on “Lyme Question: Does Lyme Disease Cause Anxiety or Panic Attacks?”

  1. I feel your pain! I have had lyme and co since 1996. I was misdiagnosed with CFS in 1997 and correctly dx with lyme and co in 2008. I have lived for years with anxiety/panic/fear without reason. In 1996-1997 I was told it was anxiety. I found out in 2012 that the ‘anxiety’ when my heart would suddenly accelerate was actually PSVT and my heart rate was recorded at 248 beats per minute.
    I graduated as an RN in 2004 at age 25. It took me years of starting and stopping college to get the degree bc of Lyme and co. Being a nurse I did not go to the ER or even breathe the word anxiety bc I know that medical professionals WILL attribute EVERY symptom to anxiety.
    I figure I would rather die at home anyway than a hospital. I had your extreme fear of meds and supplements after having two bad reactions. I didn’t even like taking B vitamins due to a niacin flush I have had before.
    I met a lyme doc my friend had and she got well. He asks at each appt if I am willing to do x y or z. He will give me a few antibiotics to choose from and ask which one I am comfortable with. I just started IV rocephin and of you had told me two years ago I would be doing this, I would have gotten a good laugh.
    As scary as the meds are though, I am sick and tired of Lyme winning. I am sick and tired of watching my kids grow up while their mom lays on a couch. After escaping their abusive dad and divorcing him, I am all they have.
    I wish you the best and maybe you could look into rifemachine therapy if more inclined to do drug free? I have used rife also and I herx!

  2. The reason to read Project Day Lily is that the authors are excellent research biologists and they aver that 60% of the lymers they tested had mycoplasma.Buckle your seat belts for this one…

    1. I will definitely check out that book Jim! ONe of my Lyme doctors always says, if you have Lyme, you have Mycoplasma. Since they experimented in bio warfare and added the two together on Plum Island and Im sure this book you are talking about says even more, I will have to read it. Ordering it now.

  3. I had the same thing and they were terrible and to this day I dont know why they stopped. I know one thing, this Mycoplasma is a player and a major co-infector. I was definitive diagnosis of Borrelia and Babesia by the way.But now that I read Project Day Lily the first antibiotic I took should have been doxy,but they didn’t know that at that time.

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