I've been debating writing this blog. As it is I will have to convince myself a few times to actually post it because afterward people will probably think I'm nuts and at this point some days I think I might be. If your doubtful just google Lyme disease memory loss or Lyme Encephalopathy and see what you find.
The stuff I'm going through physically, the headaches and joint and muscle aches and pain are nothing compared to what is going on in my head. Or maybe I should say the lack of things going on in my head. It sounds funny but I can assure you. Being in there and realizing there is something wrong but not being able to do anything to fix it no matter how hard you try is terrifying. After my lab results came back my official diagnosis changed to Lyme Encephalopathy and/or
Neuroborreliosis.
.
(from
Wikipedia)
Encephalopathy -means disorder or disease of the brain
. In modern usage, encephalopathy does not refer to a single disease, but rather to a syndrome of global brain dysfunction; this syndrome can be caused by many different illnesses.
The hallmark symptom of encephalopathy is an altered mental state. Depending on the type and severity of encephalopathy, common neurological symptoms are loss of cognitive function, subtle personality changes, inability to concentrate, lethargy, and depressed consciousness. Other neurological signs may include myoclonus (involuntary twitching of a muscle or group of muscles), asterixis (abrupt loss of muscle tone, quickly restored), nystagmus (rapid, involuntary eye movement), tremor, seizures, jactitation (restless picking at things characteristic of severe infection), and respiratory abnormalities such as Cheyne-Stokes respiration (cyclic waxing and waning of tidal volume), apneustic respirations, and post-hypercapnic apnea.
I have all of the symptoms that are highlighted.
Neuroborreliosis is a disorder of the central nervous system caused by infection with a spirochete of the genus
Borrelia.
The microbiological progression of the disease is similar to that of neurosyphilis, another spirochetal infection.
Neuroborreliosis occurs as a rare manifestation of late Lyme disease, although it has also been reported during early infection.
Neurologic symptoms of neuroborreliosis include the meningoradiculitis (which is more common in European patients), cranial nerve abnormalities, and altered mental status.
Lyme Encephalopathy and Neuroborreliosis are often misdiagnosed as Alzheimer's disease, Acute disseminated encephalomyelitis, Viral Meningitis, Multiple Sclerosis, or Bells Palsy because their symptoms mimic each other.
(from this article) Everyone with LE has their own unique profile of symptoms. The assessment of these signs and symptoms is one facet of the total clinical assessment of Lyme disease. (I am going to cut and paste the ones I am experiencing and try to give examples)
Attention
Attentions span ( a whole new level of A.D.D.) - Many
Lyme disease patients have acquired attention impairments which were not present before the onset of the disease. There may be difficulty sustaining attention, increased distractibility when frustrated, and a greater difficulty prioritizing which perceptions are deserving of a higher allocation of attention.
If we compare attention span to the lens of a camera, we need the flexibility to constantly shift the allocation of attention dependency upon the current life situation. For example, we shift back and forth between a wide angle and a zoom lens focus to increase or decrease acuity of attention depending on the needs of the current situation. A loss of this flexibility results in some combination of a loss of acuity (hypoacusis), and/or excessive acuity to the wrong environmental perceptions (hyperacusis). Hyperacuity can be auditory (hearing), visual, tactile (touch), and olfactory (smell).
Auditory hyperacusis is the most common. Sounds seem louder and more annoying. Sometimes there is selective auditory hyperacusis to specific types of sounds. (When I'm on the phone if the kids are talking or messing around or fighting I am completely unable to ignore them. I have to find a different room because all I hear is them I'm unable to focus on the person on the phone)
Memory
Memory is the storage and retrieval of information for later use. There are several different memory deficits associated with LE. Memory is broken down into several functions – working memory, memory encoding, memory storage and memory retrieval.
Working memory is a component of executive functioning. An example of working memory is the ability to spell the word “world” backwards. Sometimes there are impairments of working memory as it pertains to a working spatial memory, i.e. forgetting where doors are located or where a car is parked.
(When I read this I tried to spell world backwards. I didn't think it would be an issue but how often do you find yourself trying to spell words backwards. I couldn't do it. I had to spell it forward in my mind to get each letter of it backwards. By the time I got to "r" I forgot where I was in the spelling of it and gave up. I can't tell you how many times I've gotten into the passenger side of the car to drive somewhere only to realize I needed to be in the driver's side. It seems silly which makes it all the more frustrating. I should know better and yet I don't)
Short term (recent) memory is the ability to remember information for
relatively brief periods of time. In contrast, long term memory is information from years in the past (or remote).
In LE, there is first a loss of short term memory followed by a loss of long term memory very late in the illness. Patients may have slowness of recall with different types of explicit (or factual) information, such as words, numbers, names, faces or geographical/spatial cues. Not as common, there may also be slowness of recall if implicit information, such as tying shoes, or doing other procedural memory tasks. ( I have a hard time remembering phone numbers. Not new numbers but ones I call regularly. My sisters, brother, mom, even Ryan's number sometimes. A number I call a few times a day. A lot of the time I have to look it up in my cell phone to be able to dial...Cooking - recipes I used to have memorized I have to look up and read as I cook. Its gotten so frustrating I find myself doing less and less "home cooking" and more convenience cooking because trying to do all the steps for a meal is too overwhelming. If I take my shoes off some where other than by the door I might have to spend 15 minutes looking for them even if they're in an obvious place. Loosing my keys when they're in my hand happens on a weekly basis. These are not the only things but just examples to give you an idea. )
Errors in memory retrieval include errors with letter and/or number sequences. This can include letter reversals, reversing the sequence of letters in words, spelling errors, number reversals, or word substitution errors (inserting the opposite, closely related or wrong words in a sentence.
Processing
Processing is the creation of associations which allow us to interpret complex information and to respond in an adaptive manner. Some LE patients say they feel like they acquired dyslexia or other learning disabilities, which were not present previously.
Reading comprehension:
The ability to understand what is being read. (You know when you were in school and you had to read something for an assignment but didn't take in or remember anything you read? That happens to me no matter what I read. I have to focus very hard to be able to take any of it in. And even then I still miss parts of it. I find myself skimming over large paragraphs because I can't process any of it.)
Auditory comprehension:
The ability to understand spoken language.
( Easiest example is the teacher from Charlie Brown. Some days and conversations that's what it seems like to me. Ryan and I got in a huge fight this weekend because I thought he was leaving Sunday morning early for the yard when in fact he was leaving Saturday night after supper. He insists he told me more than once but I honestly had no clue whatsoever. In fact I corrected a couple of his friends who told me he was leaving Saturday thinking they were wrong. Of course I would know better than them,
wouldn't I?)
Fluency of speech:
The ability of speech to flow smoothly. This function is dependent upon adequate speed of word retrieval. (Easy example is having a word on the tip of your tongue but not being able to think of it. This happens all day long. I just give up and say I lost my train of thought so I don't look like a complete incompetent)
Fluency of written language:
The ability to express thoughts into writing. (This you may have noticed in some of my blogs recently. As I reread them I try to edit them so they make sense. Some of them I have no idea where I was going with what I was thinking and so my thought ends with no further explanation which probably leaves you thinking ..WTH?...I also find when I'm reading back that I miss entire words or put the wrong words in for something. When I notice I've done this after posting I'm embarrassed and I try to fix it as quickly as possible. I'm going to stop doing that so I have something to look back on when I get better to see how far I've come)
Handwriting:
The ability to write words and sentences clearly. (You all don't see this but my handwriting has gone to heck. I used to have neat handwriting. Now I'm so busy trying to remember how to spell words and remember what I'm writing that I can't form the letters right as I write them. I find myself having to stop in the middle of my signature to remember how to flow into the next letter)
Imagery
Imagery is a uniquely human trait. It is the ability to create what never was within our minds. When functioning properly, it is a component of human creativity, but when impaired, it can result in psychosis. Imagery functions that can be affected by LE include:
Intrusive images:
Images that suddenly appear which may be aggressive, horrific, sexual or otherwise. (For me this is sort of like daydreaming but right in the middle of doing something like tying one of the kids shoes or talking to someone. I zone out and they're left thinking I've checked out)
Hallucinations: Hearing, seeing, feeling and/or smelling something that is not present. In LE, sometimes this takes the form of hearing music or a radio station in the background. Unlike schizophrenic hallucinations, these are accompanied by a clear
sensorium, and the patient is aware hallucinations are present. (This has only happened to me once. I was driving home at night from my dad's house. I could see a ribbon of light above me. Not like a shadow or a reflection off fog. An actual ribbon. I knew in my head it wasn't real but I couldn't make myself not see it. It didn't affect my driving whatsoever other than be annoying because I couldn't get rid of it. I was fully aware it wasn't real or I would have pulled over)
Organizing and Planning
Organizing and planning a response is the most complex mental function, and is dependent upon all the functions already described. These functions, along with attention span and working memory, are referred to as executive functioning. Organizing and planning functions that can be
affected by LE include: (this is where my biggest deficits are)
Concentration: The ability to focus thought and maintain mental tracking while performing problem solving tasks.
“Brain fog”: Described by many LE patients. Although difficult to describe in objective, scientific terms: it is best described as a slowness, weakness, and inaccuracy of thought processes. Prioritizing, organizing, and implementing multiple tasks with effective time management.
Simultasking: The ability to concentrate and be effective while performing multiple simultaneous tasks.
Initiative: The ability to initiate spontaneous thoughts, ideas and actions rather than being apathetic or merely responding to environmental cues.
Abstract reasoning: The capacity for complex problem solving.
(these symptoms are the reason I have been working on Danica's Christening gown since January and its still only half done. Why I haven't finished knitting the shorts I've been working on for 2 months. Why cooking a big meal or even cleaning the house is so overwhelming. I literally don't know where to start and even if I figure that part out I don't know what to do next, or next, or next. I get so overwhelmed with what order I need to do things in that I can't even start it. It sounds ridiculous even to me. I do manage to accomplish some things but only because I get so mad at myself for "being lazy". I find myself needing to take a Zanax before I can start putting away laundry. Believe me it even sounds ridiculous to me but I can't make those feelings go away)
Reading all of this and putting it out there is overwhelming for me but I had no idea that Lyme disease caused any of these things. I'm hoping whoever reads this will be more aware of it and more understanding to those who are going through it. I told Ryan a few weeks before I found out I even had Lyme disease that I felt like I had pregnancy brain. It really does seem like that only about 100 times worse. Everything I've read says that once I get through this treatment I should start seeing improvement but it could take months before I fully recover. I am counting down the days and doing a lot of praying.
