Struggling with Lyme disease

A personal blog about nightshades, grains, dairy, Lyme Disease… oh my!
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Category Archives: Daily Journal Entries

Going to start treatment for Bartonella

August30

I had my visit with the new doctor last Tuesday.  I left at 5:00am in the morning in order to get there in time and I was almost late.  ugh!  On a positive note, I didn’t need to get gas until I got home and I still could have driven another 70 miles.  I love my Prius  :-)

Okay, so, after seeing this doctor, she thinks we should treat for Bartonella which completely went with what I was thinking when I went in there.  I’ve started anti-fungals first (Nystatin, Diflucan) and then I’ll start the first antibiotic next week.  Then I’ll add the second antibiotic a week after that.  My fingers are crossed that treatment will help this time.  I think most doctors treat bartonella last, so I was happy to hear that she looked at my symptoms and examined me and said bartonella first.

I wish I could get my money refunded for all of the past treatments that did nothing.  sigh.  Just think of all the money I would have now!  I was gathering my things into a plastic bin to take with to see this doctor and I had a whole plastic bag full of empty prescription bottles.  Reminded me of that scene in the movie “Under Our Skin” about Lyme disease where it showed one man emptying all of his empty pill bottles into a huge pile.  He said he spent hundreds of thousands of dollars on treatments that didn’t work.

I was more prepared for my appointment than I thought I was going in to the appointment.  If I have any advice for you it would be to keep journals of all of your pains and weirdness every day.  Also make note of what you eat and drink.  Because I had been doing that, I was able to go back to early 2011 and read my reaction to an antibiotic that I was given for bladder infection.  I remembered “not tolerating it” but going back to read it made me realize that I was actually Herxing on it.  (A herx is a die-off reaction when you kill off a bug)  This lead me to look into what that drug would affect and Bartonella showed up on the list.  Yay me for writing it down!

Here’s a link to my post about keeping a journal:  http://nightshadejournal.com/2010/11/tip-start-your-own-food-and-activity-journal/

Staring in the general direction of things

August21

And another new symptom lately… staring the general direction of something but not actually looking at it.  This happens a lot when I’m driving – scary, huh?  I’ll be looking straight ahead at traffic and then my focus would shift towards me just slightly so that I’m not really looking at the car in front of me.  I can’t see the details of it, and I’m not looking right at it, but I’m focused on it like a fly to a light.  I’m aware it’s there and it’s all I’m really thinking about, but I’m not really looking at it.  These are moments when I’m not as alert as I should be.

Starting to question whether I should be driving at all.  My scales are starting to shift towards unemployment (see earlier post).  Panicking some more!

What would I do without my second brain?

August21

Just the other day my daughter asked if I had a different cell phone before I had my current iPhone.  I scrunched my face in thought and then turned to my significant other and asked him if I had.  He kind of stared at me for a second and then said that I did have a different cell phone before this one.  So, then I turned to my daughter and said “Yup, guess so!”  What would I do without my second brain?  :-)

For those of you who are just tuning in, my tick borne illnesses cause memory issues.  This was a prime example of this.  I’m only 43, my memory shouldn’t be that bad yet.  I can now understand that look of extreme thought that used to be on my grandmother’s face.  She had Alzheimers.  When you would ask her a question she would think really hard about what you said.  I get that same look on my face now.  Scary.

Lovely new symptom… bugs? nope.

August21

Well, I have acquired a lovely new symptom… feels like a bug crawling along my skin.  It’s not the “OMG I’m just crawling with bugs” kind of thing.  It’s like a fly lands on your head and shifts around a bit.  It’s really strange.  First I thought I had a spider on my shin and I would swipe at it.  Then I would feel it again shortly afterwards, finally look down and nothing is there.  I felt it on my head today.  Lasts only a few seconds or so, then goes away.  Then comes back a while later.

When I really think about how it feels it’s like a nerve or a muscle spasming (is that a word?) so fast that it feels like something crawling on you.  Like a buzzing.  Really weird!

My new doctor appointment is next Tuesday.  So, I’m spending my time trying to organize all of my notes and get my thoughts in order.  With my brain on vacation, I need all the time I can get to get it all down.  I also have a cheat sheet of my notes.  I’m running out of steam, though, in my organization efforts.  I’m in a phase where I don’t want to move or think at all.  Stupid disease!

Walking the fine line between employed and unemployed

August10

I’m definitely at that point where I’m walking the fine line between being employed and being “let go”.  I’ve been able to fake it up to this point, but it’s starting to become obvious that I’m not working to my usual standards.

  • It’s getting harder and harder to get out of the house and drive in.
  • My brain is becoming more and more fuzzy thus making driving something I maybe shouldn’t be doing.
  • Some days are worse than others.
  • I fake it… I smile, I try to walk normally.
  • I keep a list of everything in case someone asks me a question because I can’t remember things.
  • I sit at my desk and my mind wanders.
  • My muscles take turns twitching.
  • My shoulders and upper arm muscles will seize up at times. My stomach muscles do, too.
  • Different joints ache periodically through the day.  It moves from one joint to another.
  • The guy in the cube next to me startles me daily.  He’s angry, I flinch.  He throws things down or bangs his desk with his fist.  I want to hide.  His personal space bubble is smaller than mine… he walks right up to me to say something, I take a step back because he just freaked me out just by getting too close to me.
  • I take at least 2 days off a month because of the dizzy spells.
  • My food allergies go nuts at times.  I’m allergic to club sandwiches.  Literally.  Anaphylactic allergic.  My immune system can’t take the hit and freaks out.  Add that to the other things I’m allergic to.
  • But I still look fine on the outside.
  • They think I’m faking it.
  • I just want to lie down and not move.
  • How many days of vacation do I have left to use for sick days?
  • I usually have to take unpaid days off, but there’s only so many they’ll allow.
  • If I start a new treatment program I’ll get worse… WORSE… and then will need more days off.
  • When will I get pulled into the HR office to have a “talk”?

Hmm… I’m definitely in a funk today.  heh.

Seeing a new doctor in a few weeks

August7

I’ve decided to get another opinion, so I’m going to see a new doctor in a few weeks.  It will take me 4 hours to drive out there, but that beats flying out to DC.  Proving again that it’s a poor man’s disease, but rich man’s cure.  Very sad.

Still pondering the Lyme culture test

July24

I stumbled upon an article by Tom Grier over at www.LymeNetEurope.org entitled “Why Are We Still Sick“.  An interesting section part way down says the following:

“If the binding affinity of Borrelia burgdorferi to the central nervous system tissues is higher than the organism’s affinity for the blood stream, then the seeding back into the blood could simply be an accidental consequence of growing infection elsewhere in the body. Traveling back to the blood stream, and therefore the immune system, serves no advantage to the organism.  If, as animal models suggest, the target tissues of the organism are the brain, heart, tendons, joints, and bladder, then blood samples are a poor choice for determining relapse.”

So, if the little buggers are living in the central nervous system tissues, brain, heart, tendons, joints and bladder then the blood culture might be useless in determining current infection.  A tissue sample would be more appropriate.  Youch.  But then you have to be sure to take a sample from a place that’s actually infected.  Would fluid from a joint show the Lyme spirochetes?  Too bad I didn’t know this before they drained my knee a couple years ago.  I could have had that tested.  And, on that note, why didn’t that Orthopedic Surgeon suggest Lyme?  Here I sat with a knee joint swelled up like a grapefruit for no apparent reason.  And I live in a tick infested state.  Go figure.

Each month I get just a little bit worse

July20

I’ve mentioned before that every 30 days or so I get a 2 to 3 day period where I have recurring dizzy spells.  It seems that, with every batch of dizzy spells, I get just a little bit worse.  The last episode was terrible as far as the muscle twitching goes (luckily that has gone down since then).  And my energy level is slowly decreasing.  Fatigue is also bad… I thought for sure I was going to fall asleep driving home from work the other day.  When I got home I just went up to bed and slept until morning.  No dinner, nothing, just sleep.  I was still fatigued the next day.  I’m hoping I’m able to keep it together and keep making it into work.  I can’t afford to lose this job.

So, that brings me to the topic of what I still have living inside me that they haven’t been able to kill off with medications.  I’m convinced it’s at least one critter and not just lacking vitamins, minerals, hormones, or whatnot.  It doesn’t coincide with my monthly cycle and is relatively regular.  The doctor seems to think I might still have Babesia, but he said the medication would cost me $4,000 – and that’s for the generic!  Unfortunately, he’s just guessing.  I don’t have the “air hunger” at all which is what is making me hesitate the most.

My symptoms still mostly seem to fall under the list for Borrelia.  Do I do the culture test?  That’s $600.  What if I have Borrelia, but it’s not out to play when they take the blood sample?  Maybe I should go in during the next dizzy spell days?  That might make the most sense.

It’s so expensive to treat this.  You’re going in almost completely blind and then it’s a never-ending trial and error with medications to attempt to treat it.  AND insurance doesn’t cover this because it isn’t in the IDSA guidelines (other than a short dose of Doxycycline) and is considered experimental.

Poor man’s disease, rich man’s cure.

Warning… contents under pressure

June15

Wow, I learned that the hard way.  I bought this new thing I found called “Coconut Aminos”.  It’s supposed to be a substitute for soy sauce.  Well, when I got it home, for some strange reason, I shook the bottle a bit on my way to putting it in the cupboard.  When I set it on the shelf, it started to hiss at me.  So I looked closer and it started to dribble down the sides.  I thought “Yikes!” so grabbed it and put it in the sink.  I then figured I’d better open it to let out the pressure.  When I got the outer wrapping off the cap just popped off and stuff just flew out of it.  And, of course, what color shirt was I wearing at the time?  WHITE!  Of course!  so I had to run upstairs and try to wash it out.  Didn’t work so well.  The stuff stains immediately.

I haven’t tried using it yet, but smells like soy sauce.  Only comes in little 8 ounce bottles, though, so if you have a recipe that calls for more than that, you would need to buy multiple bottles and it’s not cheap.

They’re looking thin, but not healthy

June10

I noticed this again today…  Had a graduation party to go to and a woman there looks to have lost quite a bit of weight.  Unfortunately, what I thought when I looked at her was that she didn’t look healthy.  Yeah, she was thinner, but was just not looking right.  There are a couple of people at work like that, too.  They look more strung out than healthy.  I think I’d rather have some extra pounds than look that way.  Wow.  I wonder what they are doing to get themselves like that?  I didn’t want to ask… socializing is not my thing, especially when they are personal questions like that.  I do not have the knack of conversation without sticking my foot in my mouth.  Things always come out wrong.

Although, I wish I could lose some weight.  ugh.  Struggling lately with what in the world to cook.  Paleo without nuts, dairy, eggs, or nightshades.  Yeah.  fun.  Trying not to give up.  Had, though, huh?

Up side… still enjoying my car  :-)

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