Hello! I realize it has been forever since I was last here, writing about Lyme for all of you. For that, I apologize. I felt that it was really important for me to get back here to write this post and share with you my experience, my story, the lessons I’ve learned with this devastating disease we call Lyme.
In the 4-5 months since I last posted here a lot has happened. Some unavoidable life events came along to bombard the seemingly calm routine that I had created for myself-but that’s how life goes, and we all keep moving forward. No, what really triggered my lengthy absence from here was my Lyme. No, not my Lyme-the Lyme. I do not own it, control it or have any affinity towards it whatsoever. For a while it seemed as if I was getting better. A lot better.
But my condition got worse. With a devastating ease the Lyme crept back into every facet of my daily life-to a detrimental and debilitating degree. I don’t mean ‘debilitating’ like those long months when I needed to walk with a cane, or when walking wasn’t even an option. This form of debilitation took us all by surprise-most of all me. I could not imagine that my mind and body would betray me in such a way.
A few months back, my diagnosis (which is Lyme Neuroborreliosis-if you recall, it means that the Lyme has gotten into the tissue of my central nervous system) was upgraded. Tacked onto that my Doctor added the coinfections Bartonella and Babesia. On paper it seemed more intense than it actually was. I was still feeling pretty good, so we just added some more antibiotics and supplements to my treatment regime and off I went. I was considering getting a summer job. Part-time, of course, just something to help myself edge back into the normal, functioning human life out in the real world. I had even begun to entertain the possibility of going back to school and finally finishing my degree. All in all, things weren’t too shabby.
Perhaps it was that the antibiotic treatment had plateaued, or perhaps it was the encounter I had with a medical professional telling me it (the Lyme) was all in my head, or maybe it was just a perfect storm of events both outside and inside of me.
It all started one evening when, for no apparent reason that we could discern, I passed out. When I passed out I smacked my head off the floor and the result was a concussion-the rest is a blur. I know that I took an ambulance to the hospital, that I was never appropriately checked for a concussion and that my symptoms were all but completely dismissed at the ED. To be fair, I don’t think it is in the nature of ED docs to know about Lyme, especially in the big scheme of things when all they see is such a small slice of a patients life.
From there things began declining rapidly. Bartonella has been known to cause psychiatric manifestations. A fact I had done a good job at not allowing into my bubble of healing. However, that bubble became perforated. I began to believe that maybe all of this really was in my head. Maybe I really had created some kind of psychosis in which I’ve manifested all of these crazy symptoms. The rational side of me knew that you cannot make yourself have seizure/fainting episodes-that is something that happens to you as a result of something else.
I’ve always been a bit crazy, but I kind of always believed it was a good kind of crazy. And then I let the real crazy in. The deep, dark kind that lingers in the back of your head, crawling along the inside of your skull like a centipede constantly whispering contradicting things to you-causing you to second guess every decision you make-every decision you’ve ever made. I let it in and then I wore it like a coat. My anxiety level went through the roof. My O.C.D. was out of control. Due to the recent concussion the headaches got worse, my body would randomly decide to start dry-heaving with nothing ever coming up, and I was tired-so tired.
I will now willingly admit that I let this blog drop. I had several opportunities to write again, to keep it up and running-but I simply just did not. There were emails sent to me to see what the plan was-I ignored them. In the midst of what was starting to feel like a complete and total nervous breakdown I had cocooned myself so deeply inside my head that the outside world became a place I did not want to exist in. Just sending an email saying that I couldn’t continue my blog due to medical reasons was too hard. Just the thought of having to do it would cause prickles of anxiety in my chest and full body tremors. I began skipping appointments-not even calling to cancel-then dodging the calls to reschedule. I would go weeks without seeing anyone but the people I lived with. Days without texting, calling or emailing any of my friends.
I was decidedly not me. I was no longer Hannah. I knew it, I could feel it. I had no control over it. I had moments, days where things were normal, and I didn’t feel like I was losing my mind-but they never lasted. That’s just what this disease does to people. It changes you into someone you don’t want to be, someone you never thought you could be. You are no longer yourself, and instead the disease takes over.
The disease, it breaks you, and it destroys relationships, and ruins things you used to love. For months I had changed, there was a definitive shift in my personality. I was in a constant state of depression and agitation.I became angry at everything, resentful, spiteful. I had moments of inexplicable meanness. I would pick at the personalities of those I loved most, I would snap at them. I became critical of everything people did. I started to feel like I was drowning in my surroundings. Nothing felt comfortable anymore, my house, my skin. I withheld everything. I bounced from feeling everything all at once, to feel nothing at all. I stopped caring about things. To be clear, I was not unaffected by all of this. As much negativity and hostility that I exuded outwards towards people, I was keeping twice that for myself. The worst part is how aware I was. I knew I was being an awful person-how could anyone stand me? And instead of working on communication or apologizing, I just practiced the art of self-loathing. I became isolated and desperate.
And then suddenly, one morning my BP bottomed right out and I passed out again. I believe I passed out twice. When I came to I began puking up everything inside of me. That day, July 2nd, I spent the whole day in the ED. Predictably, nothing really came of it-though the Doc did mention how the increasing frequency and severity of these events was unsettling. So I was discharged. A very large part of me was hoping I could be admitted. I wanted to feel safe and sane for a while. Get fluids and anti anxieties pumped into me. I wanted someone to look at me, see that something was gravely wrong, and do something about it. Instead I spent the following week feeling slow, weak, and extremely anxious. Panic attacks became a daily occurrence, and I had convinced myself that I was going to die of a heart attack at any moment-which, frankly, was not completely outside the realm of possibility.
Now, I am seeing a wonderful new LLMD, I have made a lot of progress with my amazing counselor, I have a new treatment protocol that will hopefully have me feeling more myself in the coming months, and I’ve started to do a lot more little things that help alleviate all the mental, neurological distress. I am still not my old self, which I can feel and if I dwell on it I become unbearably sad, but I now believe that my old self is attainable again. I’ll get there. It will just take time. And it won’t be easy, and things will probably get worse before they get better, but I’ll survive it.
There is no clear science to back this up-though there are cases I’ve read where people previously diagnosed with Schizophrenia were tested and subsequently treated for Lyme causing their psychiatric symptoms to alleviate almost entirely**. What I have is my own experience and, having read many other Lyme sufferers experiences, the knowledge that I am not the only one who has gone through this. I know I am not my illness, and I know that it is most definitely not all in my head. It is unknown how any one patient will react to Lyme and its coinfections. Some may lose the ability to walk and randomly fall asleep and be unable to wake up, some maybe experience moderate to severe neurological and psychiatric manifestations, some may lead a relatively unaffected life. What will happen will happen and there is no way to stop it. You simply have to just find people who believe and support you and go through it. Beat it. Find a treatment protocol that works and come out on the other side a stronger person.
This story, this lesson is important because sometimes a person struggling with Lyme is going through something monumentally difficult, frustrating and tragic internally. You would never know to look at them that they were sick. Having a disease that is widely discredited can be unbelievably damaging to a patients mental state and their spirit.They may burrow deep inside their heads and decide to disappear from the world for a while. It isn’t you, it isn’t them-it’s Lyme. Because sometimes life happens, and the only defense we have is to hide from it for a while until the storm passes. Please don’t give up on the ones you love who are suffering from this detestable disease. It’s not always all in their control. And if you are suffering from Lyme (or anything, really) you don’t give up either. It gets better.
To those I’ve hurt, disappointed, and let down during my crazy times-I am infinitely sorry. To my readers, I honestly hope I will be able to keep this blog up and running. It won’t be on a regular schedule, but I’ll do my best. To the people who’s calls I’ve been dodging, I’m working on getting back to you! Slowly, but surely.
Next time: Herxheimer Reactions and what the crap they even are.