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  • Writer's pictureElla Steinbeck

More to the Story: Ehlers-Danlos Syndrome Wasn't the Only Reason for Excruciating Pain

I have been absent. Not just absent from my humor column. I have been absent from life. As you know, or might know, I have something called Ehlers-Danlos Syndrome. It’s painful and horrible and since it affects collagen there is no part of my body that is off limits. If you have time to Google it I suggest it. It’s all very medical and interesting if you’re into that kind of thing. Very Dr. House-y. You’ll learn about connective tissue, Mast Cell Activation Disorder and POTS or Dysautonomia. That will all sum up EDS in a very confusing package with a not so pretty bow.I have written about it in the past in a column titled “Dealing with Ehlers-Danlos…or why hyper-mobility isn’t a cool cell phone plan and doing the splits is bad”. Well 2 weeks ago I found out that I have Lyme disease. Chronic Lyme. Which means its gone untreated and settled into my body for many years. Another illness. How can this be?I’m not sure exactly when I contracted Lyme or if I had multiple exposures but I can safely say I either got it when I was 29 years old or when I was 6. I wish I was kidding. How did I get here?

A year ago I had tried medical marijuana for pain and anxiety. I have never been good with THC, I practiced many times to no avail, it makes me paranoid and scared feeling. I took the THC part of it at night and the CBD during the day. I even slept paranoid. I was paranoid about my sleeping. Eventually that subsided and I was sleeping OK with it. Then my lungs started to hurt from vaping. I also had the pills but they take longer to kick in. So you take a puff and a pill at night to get to sleep and stay asleep. Three months later I found myself severely depressed. I mean suicidal depressed. I was disassociated. I was miserable. I was completely numb. I was going through the motions of life but not living it. I immediately quit the medical marijuana. It took 5 months for me to feel normal-ish. Five months before I actually wanted to eat something or do something. Five months of just checking in with myself, feeling like it would never get better. It did get better. It’s a process. I’m still finding my way.

So what’s that have to do with Lyme? I’m glad you asked. I was having a ton of cognitive issues before, during and after the “weed fiasco”. They had been getting progressively worse. I was having a hard time with word retrieval and getting appointments wrong. Brain fog is part of Ehlers-Danlos because it’s autonomic and we often times have autonomic dysfunction. I thought it was part of that or maybe Alzheimers or early dementia. I’d look at the computer and not be able to recall names of who I needed to email. I would start with A’s and scroll through all of them then the B’s and so on til I’d find it”. Or I’d put in a word and hope some old emails would pop up that connected to the person I was hoping to reacall. I had a feeling of confusion and like I was probably doing something wrong all the time. It was very disorienting and hard to tell people about. I couldn’t think of the words to tell them even if I really wanted to. Every time I told a story it was filled with “nevermind “ or “uhh, shoot, I can’t remember.” I would fill in sentences with acceptable words but not the words I was looking for. It was affecting me socially. I’d opt to keep my mouth shut and do a lot of smiling and nodding and tried to limit my speech to simple interactions. I also have social anxiety and throwing one more reason to feel uneasy in social situation isn’t helpful. Anxiety and depression is also part of Ehlers-Danlos syndrome.

Why was this getting so much worse? Was I experiencing early Alzheimer disease? It’s possible. I was in a car accident when I was 22 years ago and had a traumatic brain injury. I had also had several concussions in the past. I knew I should probably get this looked at. I tried to get into a brain study for TBI and Alzheimers but never was accepted into a study. I couldn’t take it anymore. Between the severe depression and brain fog I had to do something.

I decided to make an appointment at the Psychoneuroplasticity Center outside of Dallas TX in November of 2018. Why there? They take into account the whole person. They look at nutrition, do brain mapping, investigate the adrenal system and hormones. They cover many things. I felt this was my best shot at understanding whatever was going on inside my brain and body. Lo and behold I found out I qualified for Mensa and didn’t have Alzheimer’s disease. I do have a bit of a learning disability or ophthalmological disturbance called convergence insufficiency. It’s addressed with behavioral optometry and can be rehabbed. I’m still not sure you should qualify for Mensa if you didn’t even know your IQ was being tested.

While I was there I also found out I that I am hypervigilant. I have a brain that loops and obsesses on things and that’s due to my brain not lighting up the way it should. I am addressing this with biofeedback. It’s fixable. I also have brain inflammation and malabsorption issues. Is this Ehlers-Danlos related too? It can be. Many patients have these same symptoms.

My brain also has enough Delta which is why marijuana doesn’t work for me and makes me depressed and paranoid. People who do enjoy pot have less Delta. Some people with low Delta that are chronic users can eventually become paranoid putting themselves in a state of too much Delta. I know a few of those who quit late in life for that exact reason. I was learning so much! (Wait. Was it Delta? Well, it was one of those brain waves I can’t quite remember #brainfog). It was all very interesting to me.

Guess what? Cognitive issues, joint pain, POTS and Mast Cell issues are all present in Lyme disease. Even all my weird allergies, interstitial cystitis, and my migraines can be Lyme. Before I got all my diagnostics back from the PNP Center a doctor I saw had a hunch because his wife had Lyme. He mentioned Lyme to me. I immediately went for a test. P.S. Something they don’t tell you…don’t get the ELISA AB test - it’s pointless. Only the Western Blot will show chronic Lyme. ELISA test is only for recent exposure. Remember that. If you have been tested but still have pain and other mysterious issues get re-tested. So, Ehlers-Danlos may not be the reason for all of my orthostatic and Mast Cell problems. It may not even be the reason for all of my pain.

Does this mean that had I been treated for Lyme 12 years ago when I became disabled that I may have lived a normal life? Maybe. I have been in pain since I was a kid but managed it somewhat successfully until 13 years ago. Was it Ehlers-Danlos with residual pain from that car accident causing some of my problems while the pain from Lyme was responsible for stopping my life? The accident did exacerbate my neck, back and shoulder problems. I had memory problems after that due to the brain injury. I was in awful terrible pain all over and had a shoulder spasm for 20 years that wasn’t released until I found Dr. Norman Marcus in NYC many years later. It kept me up at night. Was Lyme triggered during that accident? That’s a theory. It’s autoimmune. Or did I have multiple bites? Something I knew nothing about all of a sudden I know everything about.

I’m on antibiotic treatment for 3 months to start. I try to keep a positive upbeat façade about everything. Nobody likes a Debbie Downer. I hate looking like I need sympathy but I’d love some empathy. I guess that’s why I wrote this. You never know what a person is going through by looking at them. This world could use some compassion and empathy. A little less take and a lot more give. Don’t get me wrong. I’m not saying set yourself up to be taken advantage of. I am saying be kind and ask questions. If myself or some other person gets on a full bus and asks, “Would anyone mind giving me a seat? I know I look fine but I am sick,” offer them your seat. I once asked 3 busses to do that only because I was at my wits end and needed to get home. Not one person gave me their seat.

It’s hard when you don’t look sick. In fact, I have had people shove me on purpose when I am using a cane. I even had two bus drivers close their doors on my cane as I was using it to get onto the bus. I am tall, thin, and able looking but I am not able. I need help. I am fighting every day I get out of bed. Every step seems like a miracle and carrying a bag means I may have spasms and pain later that will need treatment or medication. So, what’s it like to have an invisible disability? Really hard. What is it like to have two invisible illnesses? Really really hard.

A version of this article was published in The Rockland County Times and also in The Lyme Times for Lyme Disease Organization under different titles in April 2019. This blog is an extended version. If you would like links to those other ones please see below

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1 Comment

Jana Steingass
Jana Steingass
Mar 04, 2022

How has your treatment gone for Lyme disease?

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