It's likely that I've had Chronic Lyme disease most of my adult life. I've been misdiagnosed a few times with MS, Parkinson's, a possible brain tumor, PCOS, Insulin issues, Chronic Fatigue, and more. But the root of what I have was caused by a tiny tick bite that gave me Lyme Disease.
I lived my whole life tired, in pain, and knowing something wasn't right. I worried night and day, I counted heartbeats and planned my funeral. Nobody, even my doctors believed me. I was encouraged to seek psychiatric therapy because my body was telling my brain something that medical doctors couldn't see.
It started with a tick.
After 15 years of struggle and fear, by accident, the answer was Lyme Disease.
I think sometimes that I had to wait for science to catch up to my disease or maybe I had to learn how to forgive my body for not living up to my expectations.
Now,I have a great doctor who is willing to keep up on my treatment and work with me to be able to live with low symptoms. But like other long-term diseases, there are days when the disease makes a showing and you have to take a step back from the rest of your day and pay attention to your body and needs.
Flare-Ups change the way you think.
I can tell when I am starting to flare up, my body just plain hurts, I feel just off, and sometimes it's like having the flu only without the snot and coughs. Then it's time to go back on treatment with high doses of antibiotics, rest, and trying to get through the detox that makes me feel worse and even a bit crazy.
Pain is terrifying. Living in pain and fear takes a toll on your mental health. I've been in and out of therapy for many years. Sometimes I just need reassurance and other times I need assistance bringing myself to a calm place.
I know that I can be forgetful, misplace words and insert new ones, and I am terrible with names and faces. But I am not crazy.
There are sometimes other moments where I just feel like I just am not right. I have to look carefully at my actions and thoughts all the time.
The Lyme and Mental Illness Link
I found an interesting article relating Chronic Lyme to some interesting psychological issues.
“A recent European study shows that psychiatric in-patients are nearly twice as likely as the average population to test positive for Lyme, and the National Institutes of Health are currently sponsoring a major study of neuropsychiatric Lyme disease in an effort to illuminate specific changes in the brain”
How sad that there might have been so many people put into mental hospitals with issues that could have been treated with antibiotics. But what sort of mental issues? According to Debra Solomon, MD, a psychiatrist who practices in North Kingston, RI.
“How can a physician tell the difference between true mental illness and symptoms linked to Lyme disease? With Lyme disease, a patient’s psychiatric symptoms don’t quite fit the textbook definition. There is usually no previous history of psychiatric illness. Symptoms often come in cycles. Patients usually do not respond well to psychiatric medication. And they often describe their problems in very physical terms.
Lyme patients often say, “There’s a wall in my brain and I can’t seem to move my thoughts from the back to the front.” “This arises from encephalopathy, an inflammation in the brain that affects cognitive function,” Solomon explains.
Symptoms are said to worsen as the Lyme bacteria grow active and begin to reproduce, which is what I call a flare-up. It's usually when I know to go see my doctor for treatment. But mentally it's hard to tell what's just a mood change and what's a flare-up. So how does having Lyme disease affect how I deal with other people? Dr. Virginia Sherr a psychiatrist in PA has this to say:
“My patients come in to talk about their marital problems and are surprised to learn that they are linked to an organic illness,” Ninety percent of Sherr’s patients test positive for Lyme disease. She then has the job of describing to them just how this condition can affect the mind and the emotions.
Lyme disease can cause increasing irritability and dramatic flares of anger, says Sherr. “Suddenly you hear bone-cutting verbal assaults from people who are usually more measured and benign. They may have been harboring some small grievance for years, then that hot spot comes to life and they spew out all this venom. Such outbursts cause lasting wounds.”
Lyme is a tough disease to have and even tougher to diagnose. There has to be so many people living with this that have just no idea of what's happening to them and have lost so much due to its effects on them.
Mental Health and Physical Health
From the loss of jobs, loss of health, and even the loss of support in their families and friends, these people just see so much hardship without reason. It's no wonder that depression is a big problem among Lyme Disease patients.
Robert Bransfield, MD, a psychiatrist in Red Bank, New Jersey even relates the illness to marital problems that can show up in domestic violence cases, child abuse, and how people lash out at other people. “Lyme disease is like an injury of the brain,” says Bransfield. “Patients are less able to think things through, and tend to act impulsively”
People with Lyme disease aren't crazy.
I know that I personally have a problem with how they react to certain stressful situations. My hands get so cold, I lose circulation, and I just shut down.
Over 40 million Americans are impacted by anxiety disorders each year according to the National Institute of Mental Health (NIMH)
I deal with panic attacks now that I've turned 40+ and I work with anxiety over my health issues. The most beneficial thing that I've discovered is the use of CBD oil to treat my inflammation and anxiety without any side effects and NO it doesn't get you high.
As of 2018, there are a total of 46 states (including the 8 states mentioned above) where CBD is legal with a prescription for medicinal usage.
CBD is a cannabinoid found in the cannabis plant. And you can take the oil orally or topically. I've done bone and it is wonderful for pain and for anxiety.
Feeling suicidal is a known issue with Lyme patients and doctors need to be aware if these feelings come up. Even reacting to certain medications, the psychological effects can be multiplied. Suicide is one of the top reasons for Lyme related deaths.
Medications can make you feel worse and mentally challenge you.
During one of my treatments, I kept having the feeling like my thoughts were all screwed up. With each dose of my medication, I would be overwhelmed with the desire to end it all. I didn't want to live anymore, didn't want my family to have to see me that way, and I darn sure didn't want to keep taking all of the medications I was under.
After a few days, I spoke with my doctor who said he wished he'd known I was going through that because one of the rare side effects of the medication was depression and suicidal thoughts. Now that medication is on my “Do Not Take” list.
Lyme does change the way you react and think.
Lyme produces a microedema, or swelling in the brain. It changes the way you react, the way you think, and causes blockages of thoughts. But the good news is that there is treatments that do work and doctors who are becoming more and more aware of the disease and options.
So please don't think there's no hope if you are living with Chronic Lyme disease. Talk to your doctor about everything from your aches and pains to your really bad days.
To learn more about Lyme disease and to find a physician in your area, go to the ILADS’ website at www.ilads.org. Other helpful sources include the Lyme Disease Association (www.lymediseaseassociation.org) and the Lyme Disease Network (www.Lymenet.org)
Also this blog was written after reading the article The psychological effects of Lyme disease:Can a tick bite drive you crazy?