Lyme Encephalopathy (aka - I'm losing my mind and I'm completely aware of it)

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.
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(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.

Taking Control...

In case anyone is lost or curious about what is going on with my Lyme Disease diagnosis and the doctor drama I'm dealing with I wanted to type up something a little more in depth than Facebook statuses provide.

At my first appointment with the Rheumetologist I voiced my concerns of neurological Lyme symptoms.  The rheumetologist did a physical exam checking reflexes and strength.  She felt that even though I had some neuro symptoms (like a chronic (5 month) headache, forgetfulness, trouble concentrating, chronic fatigue (yes that's why I'm always taking naps, really, I'm not lazy), and a depression and anxiety diagnosis) they weren't enough reason to do further neuro testing.  She prescribed the month of Doxycycline and a bunch more pain medicine and sent me on my way.  She scheduled a follow up for 3 weeks later.  The next day I had the flare in symptoms when I stayed with my mom.

Fast forward 3 1/2 weeks.  I went back in.  The inflammation in my knee was down some from when it flared and the pain meds were keeping a good handle on the pain.  However, my knee was still just as full of fluid, and by her own observation was worse than it was at my first appointment.  I reiterated that my headaches/migraines and other neuro symptoms were also not improving and that, in fact, my lips, eye, cheek and ear had started twitching almost constantly.  She felt that the twitching could be from the Prednisone I was on for the knee inflammation and suggested I wean off of it. She did an arthrocentisis (sucking fluid out of the knee with a syringe).  She put the needle in and she had to push hard to get through the lining of the knee joint.  It was extremely painful and I screamed when it popped through.  I felt terrible but I couldn't help it.  I cried the entire procedure.  Every time she pulled back on the syringe I could feel it.  Finally she stopped and unscrewed the syringe and left the needle in my knee.  My knee had so much pressure the fluid flowed out onto the gauze so she let it drain until it stopped. That wasn't nearly as painful. After it stopped draining she injected a Novocaine/Cortisone solution and bandaged me up so it wouldn't drain back out.  She told me if it didn't help by the following week that I should call and they would start IV antibiotics at that point.  She left the room to call a volunteer to wheel me down to my car.  She didn't realize I was still in the room when she came back and went in the dictation room across the hall.  She started talking to another doctor about me. I heard her ask him if he'd heard me scream...at which point she laughed.  I pretty much knew at that point I would probably be looking for a different doctor if I didn't get better.

A week passed and the swelling in my knee had gone down but wasn't significantly better and was still sore.  My headaches had not gotten better at all.  I called and let her know how I was doing and I felt at that point it was probably best to go ahead with the IV antibiotics. 5 hours later I still hadn't heard back so I called to find out what was going on.  Apparently they felt because we hadn't met our $1000 deductible that I should try to stick it out on the Doxycycline for another month and hope it worked.  She said I could chose but they were only going to do the IV antibiotics for 1 week because of the expense and the amount of coordination and work it takes them to set it all up.  By this time it was after clinic hours so I told her I'd need to talk to Ryan about it and get back to her.  She said they were going to be at an outreach clinic the next day and they wouldn't even be able to set anything up until after the weekend.  Which made me feel that they really didn't care that I was still feeling like crap and in pain.  After I got off the phone I called Ryan and let him know how upset and frustrated I was. We decided at that point we weren't going to continue to see that doctor.  The next day I called Aspirus in Wausau and set up an appointment with an Internal Medicine Specialist after getting some advice from a friend that also had Lyme disease.

Today was my appointment at Asprius.  The doctor listened to me. Agreed that I have had Lyme disease since May or June of last year. I probably hadn't noticed the symptoms then because I was dealing with a 4 month old baby as well as standing up in my sisters wedding.  She read through all of my tests and records from Marshfield Clinic for the past year.  She feels my post partum depression and anxiety diagnosis may partially be from the Lyme disease.  The fatigue and general lack of ambition were big symptoms in that diagnosis and those things have still not resolved even though I do feel somewhat better .  She did a physical exam to test for nerve issues.  My reflexes were weak and I was unable to keep my eyelids shut when she pulled them open which concerned her.  She did say the tingling I occasionally get in my right hand in the mornings is not the Lyme disease but carpal tunnel and prescribed me a wrist brace for that. She feels I have enough neuro symptoms to warrant deeper testing.  She ordered another Western Blot to see how my Lyme antibodies are now that I've completed my first cycle of Doxy.  She said the records for Marshfield showed that I still had a significant amount of antibodies at my last check up even after 4 weeks of antibiotic treatment (1 of Amoxicillian and 3 of Doxy).  She prescribed a migraine medication, a B-complex supplement that helps with nerve and headache issues, and a medicine that calms nerve irritation . Hopefully that will get some control over the facial twitching that hasn't gone away despite being off the Prednisone for almost 2 weeks.  If the MRI comes back okay I am to try the medications for a week and see if they help...if they do I'll just continue on with a second month of Doxy and if they don't then she will do a spinal tap to check for the bacteria in my spinal fluid. 

I had the MRI right after my appointment.  I had a headache to begin with but even with ear plugs that machine is SO LOUD.  I thought my head was going to explode right in the little tunnel of the machine.  Afterward the technician told me it would take up to 24-48 hours to get the results to my doctor and then she'd call me.  I left and went to my mom's to pick up the kids.  I had such a headache I took a pain pill and laid on the couch and napped until I could look outside without squinting and then we came home.  By the time I got home there was a message on the machine from the doctor's office asking me to call.  I'm not sure what its about and now I'm nervous since it was already after hours and I couldn't get through to anyone.  I'm hopeful that because they didn't continue trying to get a hold of me that its nothing serious.  Hopefully now I'll start having some improvement or at least know what the heck is going on and why I'm not getting better as quickly as I should be.  Thanks to everyone that has helped or offered to help and for the support and words of encouragement from everyone else.  I will update again in a week or so depending on what the doctor's office says tomorrow.

LYME

is a four letter word

Stay at Home Mom vs. Working Mom

Why is this such a debate? 

I don't get it.  

Maybe because I've been on both sides of the fence?

I know the grass is green on both sides with an occasional bare, dry, dead spot where the dog peed or where the lawn mower was set a little too low. 

I got in a bit of an argument with an acquaintance today.  Her first line of attack was that I should get a job.  I've been told this a few times when people get irritated or upset with me.  

I mean really?!

Do "you" honestly think its all computer time, soap operas, bonbons and bubble bathes?  

Do you think the only possible way I can afford to stay home is if we have government assistance so therefore I must be mooching off society?  

I can assure you that my husband is very hard working and makes enough money to support our family without government assistance.  We have some pretty darn good health insurance too.  

(I'm sure I'll get accused of bragging for the last two sentences)  

We make sacrifices in other areas so I can be a stay at home mom. I save us money by canning vegetables,  raising animals to feed our family, and cloth diapering, among other things.  

Of course even if doing that didn't save us money I'd do it for the health benefits.  

Would I be able to do all of this and work a full time job?  

Absolutely not. 

I am not so high on a horse that I don't remember what its like to have to work and how exhausted I was when I got home from work.  Baking bread by hand or canning vegetables til 2 in the morning would not be an option.  I don't work at a conventional job like you but that doesn't mean I don't work.  I have a farm here.  Which apparently you noticed because you hate how much I "brag" ( because farm work is such a blast) about it.  Do you think those animals outside make their own hay for the winter?  Or get their own bales out of the barn? Or come get themselves a bucket of water when they're thirsty? Or put their own feed in their feeders to eat? I can assure you they don't.  I do all of that.  Is that not work?  

Do I think I'm better than you because I get to stay home...or because I do different things than you do to take care of my family?  

NO!

  I haven't always been a stay at home mom.  I've worked 3 jobs at once in the past just to pay my bills and provide for my son.  It was hard.  I have a lot of respect for moms that have to work outside

the home and take care of a family.  

But please don't disrespect me unless you have spent a morning thawing pipes in a dirt floor basement. 

Or until you have spent a week at home alone with no one to talk to but your 3 kids under 5 and no one to call because all of your friends are working.  

Or until you have spent 3 hours chasing 5 pigs in circles around your house 

because no one is available to help. 

Or until you have to spend an entire weekend on a tractor (that you don't know how to drive) because people who said they would help had something come up. 

Or until you spend a few days in the hospital with your 15 month old hooked to IVs from an illness 

he got at the daycare he went to for 2 days. 

Or until you go to bed alone for 290 nights a year worrying if your husband will still be alive in the morning...

not because he isn't an excellent driver but because of every 

other idiot on the road who thinks a semi can stop on a dime; 

or thinks my husband can read their mind when they change lanes without using their blinker;

or some reckless kids decide it would be fun to drop a brick off an overpass into a trucker's windshield.  

 I was on the phone with my husband when he was mugged while sitting in his own truck.  

I was on the phone with him when a man was shot behind his truck in a gang fight.  

You go through all of that.  Live that life for one month (let alone for the next 30 years) and then 

tell me I need to get a "real" job. 

Diagnosis: Postpartum Depression

Anxiety issues run in my family.  I've always been able to talk myself down and calm down.  Ryan is an AMAZING husband and knows when I'm starting to get anxious and panic.  He deals with my "craziness" better than I do. My family has a history of depression too.  I had depression at 19 and 20 when I was diagnosed with endometreosis and during the treatment following the diagnosis.  Because of that I try to be aware of how I'm feeling and what is causing me to feel the way I do.  Unfotunately, when you're busy being a wife, a mom to 3 kids, and taking care of a farm, worrying about yourself often becomes 2nd, 3rd, (and so on) priority.  I took Danica to our family doctor for her 6 month well baby checkup last week. Our doctor asked me how I was feeling and I burst into tears.  My happy face charade, that I didn't even realize I was putting on, came crashing down.  I guess I have been too busy doing everything for everyone else since Danica was born. I hadn't thought about me and how getting up in the morning has been so difficult. Danica has been sleeping through the night almost since we got home from the hospital. I shouldn't feel the need to nap on the couch every morning after getting 8 hours of sleep (which by the way is impossible to do with 3 kids). I didn't realize that every time something bad happens I feel like its my fault or that I could have somehow prevented it and then feel guilty. I didn't notice how my anxiety has caused ridiculous mood swings that even Ryan hasn't been able to figure out what to do with.  I did notice that a lot of days time slips by me. Suddenly hours have passed and I feel like I've accomplished nothing. I'm taking care of 3 kids during that time and that's something but I can't get my brain to accept that-that's good enough. Our doctor prescribed me an antidepressant and an anti-anxiety medication.  I've been on the anti-depressant for a little over a week now.  I'm looking forward to the 6 week mark when I should notice a big difference in how I feel to how I've felt the last few months.