PART II – RCT humor columnist faces serious battle with Lyme Disease & Ehlers-Danlos Syndrome

BY ELLA STEINBECK

I have been busy going to doctors and trying to find answers. It turns out this Lyme disease diagnosis is not clear cut. At all.

I had hoped it would solve some riddles instead of creating them. I’m in the process of getting blood work and MRI’s and inguinal pathway ultrasounds and other test I didn’t know existed but apparently are very important. I promise to give you an update when I have it. I hope my experiences can help you!

Since the post of my recent diagnosis I have had excruciating hip pain, compounding fatigue, out of breath when I get off of the couch, and overall just really really crappy feeling. Taking the antibiotics has not made me better. Not yet anyway. I have heard things can get worse before they get better. I told myself this was normal and to hang in there, then I told myself I am going to burst into flames if I feel any worse than I do right now, then I got mad, furious, full of rage, and I cried. It broke me.

There is something called Lyme Rage. It’s a real thing. Who knew? I’ve definitely been experiencing it for the last 13 years. I thought it was the move to NYC that caused it. It’s stressful living in this city especially when you have mobility problems. If you have read some of my past columns you’ll get a good sense of that inner fury I carry around with me. I don’t prefer it. I don’t want it. It seems I can’t get rid of. I feel guilt about it. I try to forgive myself by saying “who can blame me when every step has to be planned out. Every bag needs to be as empty as possible but I still need to carry all of my things from point A to point B. It makes sense that my patience and anxiety are being tried. It makes sense I feel like snapping”. I have a short bizarre fuse at times but otherwise I am kind, calm, happy, generous, and a seemingly normal lady. Why would I feel totally totally crazy and unhinged? They say it could be Lyme.

The Lyme Rage discovery made me think of Alec Baldwin. He has Lyme. Wow! Woah. Wait. That all makes sense! I have had my share of my own bizarre behavior… and so has he. My responses in certain situations may be a little “off” but it’s also not totally unfounded. I encounter some really frustrating and stressful situations. My reactions to those situations are not always effective. My response has often put me in danger and is not in my best interest. Like Alec! He’s done that! Alec is little like my spirit animal. I get you Alec. I see you.

Lyme causes a slew of psychiatric and neurological problems. Like this tendency to not focus, not remember what you were talking about and jump to a new topic. Right now I just started thinking about the prison system. See. I told you. I just jumped to prison. It makes sense to make that leap though because we were talking about bizarre behavior. Crime can be bizarre. How many prisoners have active Lyme? Is this causing behavior that could be avoided? Is this causing crime that could be avoided? I think it’s possible. Most Lyme goes untreated. It doesn’t even get properly diagnosed. I’d love to see if there was a correlation.

The research for that will probably not happen in my lifetime. There is like zero funding for Lyme disease. The research dollars are basically nil. Whoever is in charge has made sure that a disease that affects an estimated 300,000 people a year, although much less are diagnosed, is bankrupt. If we wanted to check out Lyme, behavior, and the prison population we’d need some Bill Gates cash for that!

What we do know is active Lyme can be responsible for *brain dysregulation, MS, lupus, scleroderma, interstitial cystitis, cardiomyopathy, multiple miscarriages, autistic/neurological type symptoms in children, Alzheimers, Parkinsons, and like 300 other illnesses. The symptoms are the same and they present the same but they get the wrong diagnosis. (I’d have to Google again how many illnesses it mimics but it’s a lot. Pretty sure it’s 300.) If all those foundations for said illnesses and diseases kept an open mind and shared into the research they might get some answers and cures for the patients/victims but they don’t. Nobody wants to share Alzheimers funding with Lyme research even if they are related. They are afraid it will take away the Alzheimers funding if they find out Lyme was a cause. Nonprofits can be just as short sighted and greedy as profit-profits (I think made up that word but it works). Kris Kristopherson walked around with “Alzheimers” for 30 years. Dying of it. You know what it wasn’t? Alzheimers. He had Lyme! When he finally found out it was 30 years later. A lot of damage was already done from the Lyme Disease but he did get better and is still able to do some touring these days.

Funding for AIDS, breast cancer, MS, all types of cancer, autism and so on is generous and that’s great , but there’s way more people walking around with untreated active Lyme disease than the aforementioned. These people are suffering and offered very few options and many times not even given the correct tests. You may need a clinical diagnosis since lab tests are so unreliable. You need the right doctor for that. Some patients may be told that they have some of these other diseases when maybe they don’t. So, here’s my advice, ask for testing. If you only have one band of Lyme make sure to Google that band and see if the symptoms correlate. Don’t just take “you don’t have Lyme” as an answer. It may not be true! If you have any odd symptoms or autoimmune problems see a Lyme Literate Doctor or LLMD. Go now. Go fast. And don’t let one more day go by without doing all you can to find an answer… or else! Don’t make me get all Lyme-y on you!

**For more information please watch the movie Under Our Skin and Emergence . They are both on Amazon Prime- and I found Under Our Skin on Vimeo as well. And please feel free to follow me @lifewithlymeandehlersdanlos

  eds, ehler danlos, Ehlers-Danlos Syndrome, Ella Steinbeck, Hypermobility, lyme disease