Crazy or just the Lyme disease?

It’s likely that I’ve had Chronic Lyme disease most of my adult life. Thankfully I’ve been diagnosed and 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.

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.

I know that I can be forgetful, misplace words and insert new ones, and I am terrible with names and faces. But 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. And 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.  From 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. “Patient are less able to think things through, and tend to act impulsively”  People with Lyme disease aren’t crazy. But I think that they do sometimes have a problem with how they react to certain stressful situations. Even 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. 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 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?

By Valerie Andrews found here: http://www.igenex.com/psychological_effects.htm

13 replies

  1. Thank you so much for your insightful comments. My husband has chronic lymes and reading things like this helps me to be patients and compassionate about what he is going through. It also helps me not to take his actions personally. Thanks again…hope you have more good days than bad!

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    • I am so glad I could help! Honestly, the summer is the hardest time for me because of the heat. So I haven’t been feeling like posting. But your response has gotten me out of my funk and given me more of a reason to write. I hope your hubby knows how lucky he is to have a sweet wife like you who cares enough to try to find answers.

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  2. I have chronic lymes. It started with chronic insomnia. 20 drs to get diagnosis. I unfortunately take like 5 things to sleep(big mistake…benzos are the worst of the bunch& never get deep sleep. Long story short it’s created horrible marital problems. We have children(always nice too) my wife thinks lymes & benzo withdrawal is an excuse if grumpy.A spouse that is supportive & researches illnesses is a blessing if u have.

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    • I completely understand what you are saying. There are so many ups and downs with Lyme. You really have no idea what you are going to get until you are right in the middle of it!

      Thankfully I have an incredible husband who understands that some days my skin just hurts and he has to give me some space and other times I feel perfectly fine.

      Really consider taking a good Adrenal Support supplement, it helps with sleep as well as the moods.

      Good luck!

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  3. My mom is suffering from chronic lyme. Every night she cries herself to sleep and says she doesn’t want to be alive anymore. This is really hard for me because I wish I could do something to help but I can’t. She says the doctors don’t help but she is now In a wheel chair, lost most of her friends and doesn’t leave the house. This breaks my heart because I know what she used to be like, social, fun, active, organized and had lots of friends but my younger siblings don’t know the real her. I don’t want them to grow up remembering her like this.. I am a senior girl in highschool and my youngest sister is in 5th grade. Do you have any advice or anything? Please

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    • I wish I could hug you tight. I am so sorry that you are going through this. She is scared and frustrated, there is a lot to deal with.

      It sounds like your Mom needs to start taking her health into her own hands. I would strongly suggest she goes to see a neuro chiropractor or a holistic doctor and ask them to test her Adrenal system. It sounds like her hormones are way out of wack and most Lyme patients do not take prescription pills well.

      I take a daily does of an Adrenal Support vitamin and one called Sepherous. Both really really helped steady my moods and help with anxiety. I have 4 kids who also had to try to learn how to figure out what was happening with me when I was first diagnosed 12 years ago.

      Lyme can be treated. You can live with it and you can even get better. You need a lyme specialist, you need to experiment to find out what is working and what isn’t. You need to fight for the quality of life that you want for yourself and your family.

      I have chronic fatigue and Fibromyalgia as side effects of having Lyme. Some days it is hard to move and other days I am on top of my care and I barely notice.

      You are a wonderful daughter and I know your Mom is thankful to have you.

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  5. This was very helpful for me.i was just diagnoses 7 weeks ago with chronic lyme’s … I have had it 20 years and I also have MS ( or so my Neuro says ) I am currently herxing and raising my 2 boys without my husband. He left almost 3 years ago…we had had enough of each other. I am a mess….mostly the pain and psychological that I suffer with. My poor kids is all I can say! This is one horrific disease! I had no clue it could advance to a stage 3 and be lethal. This article helps me understand that I am not alone….Thank You!!

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    • What a plate full you have!

      I would say the biggest thing you should take in is this. YOU can control your Lyme, it does NOT control YOU.

      If you were diagnosed with Lyme, I would seriously get a second opinion if you actually have MS. Since Lyme and MS are very similar it is hard to know how to move forward with your treatments.

      Clean thoughts, clean living, and reducing your stress helps to fight Lyme like nothing else.

      You are not alone! ~ C. ~

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      • Hi – I just read an article that was so against Lyme disease or CLD and it’s good to know that there are other out there who believe it at least exists. I went through so many very real symptoms and am in recovery now. It’s crazy they think it doesn’t exist. I went from doctor to doctor for years trying to get diagnosed with the “right” mental illness. None of them fit, and after taking medication for different things, I finally said, that’s enough, and stopped it all in order to find out not only what was wrong but what was wrong with my body and health too, which I could tell were affected. I wish you well in your recovery, and thanks for the support.

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