The Backstory

I think everything began one summer afternoon in the early '90's when I found a teeny tiny tick on my shoulder.  I was sure it was a deer tick.  One that was a carrier of the mysterious and scary lyme disease.  I went to my mom and she helped me remove it and we taped it to an index card to bring in to the doctor for identification.  We were all worried and I kind of remember a nervous bustle when my mom called the doctor. Somewhere in the mix, my little brother squished the tick.  It was deemed hardly useable for ID purposes.  I remember looking at the little thing, the outline of its exoskeleton brown, yet kind of transparent within the reddish blob of my blood on the card.  I was about 13 or 14.

I just remember the hectic feeling when we discovered the tick, and standing on the back porch looking at the deflated body of the bug, kind of wondering, "Now what?"  I don't remember a doctor's visit.  I don't even remember if I took antibiotics.  I DO remember that I never did get that characteristic bullseye rash.  And that we never really thought much about it again.

A few years later I had a bicycle accident and smashed my knees up.  Since then I have had almost daily pain in them.  They crunch when I go up and down stairs, or even just bend them in the air.  Then again, so does almost every other single joint in my body.  Sometimes the pain feels like glass between the bones.  Other times its a dull ache.  They take turns giving me problems.  On xrays, they look smooth and even, no sign of damage.

Round about the same time, perhaps earlier than the bike accident, I started having trouble with depression.  Big problems.  Back then we figured it was just misdirected teen angst, poor coping skills, genetics, etc.  Its been a nearly constant struggle.  Now, we realize it could be a symptom of lyme disease.

When was 16 or 17, I started having back and neck trouble.  I saw a chiropractor and I remember him asking me if I danced.  "Ummmm... I like to headbang...." I answered.  Back then we figured it was damage that I inflicted upon myself trying to vent said teen angst.  By the time I was 19, xrays showed that I was already starting to lose the curvature of my neck.  Was it all from the way I liked to express myself?  Perhaps its part of a bigger picture.

I had a lot of sore throats as a teen.  Not much actual strep, just tonsilitis.  I remember my family doc being concerned and saying that if I had another infection, we really should consider having my tonsils removed.  When another one appeared, I begged my mom to take me to a different doc, cuz I didn't want to have surgery.  Its possible that this was a quiet symptom of lyme and its co-infections.

Skipping to 1998, TMJ disorder jumped on me.  It was terrible!  I tried many many different things to manage it and fix it.  Exercises, massage therapy, chiropractic, wearing a couple of different mouth guards, seeing specialists, etc etc.  The only things I didn't try were braces, injections and surgery.  I managed to bring things down to a dull roar, yet I'm still plagued daily by pain and stiffness, limited range of motion, migraines, having to modify activities to minimize how it affects my jaw.  I also started feeling more and more fatigued.  I started wondering about fibromyalgia and chronic fatigue syndrome, but didn't think my symptoms were severe enough, so I didn't see anyone about it.

In 1999, the anxiety started.  I limped along, with all of these symptoms, wondering what was wrong with me, yet everything seemed to have a cause, so it wasn't that pressing. I mean hey, I'm managing ok, I'm not dying! Fibromyalgia and chronic fatigue came up in my mind a few years later, cuz damn, I have chronic pain in all 4 quadrants of my body, but I had only 9 of the tender points of the 11 needed for diagnosis.  So again, I didn't bother going in.

In 2005 I was in a car accident which messed up my upper back, shoulders and neck even more, which in turn jangled up my jaw too.  A low back injury was added as well.  I was treated with exercises, chiro, massage and meds, and it never really got better. 

2007 was a great year for me.  My husband and I bought a house and I got pregnant! But that's when the slippery slope started.  I slept the first trimester away.  My pelvis got inflamed and I could hardly walk at 5 months along.  My brain started misfiring.  I'd forget everything, not make sense, do silly things like try to put the milk in the cupboard.  I figured it was pregnant brain.  But it didn't go away when the baby was born and I started getting more rest as she grew.  It ended up getting worse.  Following conversations is difficult. Understanding concepts is often a moot point.  Trying to express myself fails because the words just aren't there.  But I just kind of bumbled along, being a new mom and enjoying staying home with the baby.

I started to realize that perhaps my weight really IS affecting my energy levels and pain levels.  So in 2009 I seriously tried to lose weight.  I did pretty good and lost 15, and hit a plateau.  To break it, I decided to add in exercise.  A light 20 minute yoga routine. I was no newbie to yoga and was super excited to get into it again.  No go.  Almost immediately afterwards, my entire body ached and cried in places I never knew could hurt.  I tried it again the next day, cuz maybe it was just overdoing it.  Same result, but worse.  Ibuprofen didn't touch any of the pain.  It radiated through my bones and in my joints - every joint in my hands and feet.  And my muscles ached and felt tenderized.  The doctor got me in right away, and gave me the diagnosis of fibromyalgia right off the bat.  He referred me to a pain clinic to manage the pain.  I got a round of trigger point injections, which helped a bunch, but not enough.  I went through their PT program, and it ended up causing more pain in the end as well.  And then there were the meds.  I don't feel like going there right now.

Midsummer 2010, one of us stumbled upon a lyme disease something or other, and it all sounded eerily familiar.  We started doing some research and came up with the difficulties of diagnosis and testing.  Dr. Burrascano's Guide to Lyme Disease (which can be found at www.ilads.org under the treatment guidelines in the "About Lyme" tab) suddenly opened our eyes.  ALLLLLL kinds of things could be attributed to lyme borreliosis.  Going down the symptom list was really scary and eye opening.  Part of me was saying, 'But that was because of that..... maybe it shouldn't be included...." Well, we also did a lot of other ruling out.  Every bit of blood I give comes back normal. There's nothing wrong with me!  We found a rheumatologist who specialized in lyme disease and saw him in October 2010.  He did not think that lyme was the culprit.  Of course we forgot to ask him *why*.  We were relieved yet frustrated.  He said, continue what you're doing with your fibro.

We decided that we would get a second opinion from a doctor who works with ILADS.  The

International Lyme And Associated Diseases Society

(ILADS) is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.  Doctors who ascribe to their train of thought are known in general as a Lyme Literate MD (LLMD).  But the rheumy appt took up a lot of energy, so I didn't have the energy to start looking for someone right away.

While I was calming down, things started getting worse.  Balance issues, hypersensitivity issues, thick brain fog, inability to concentrate, exhaustion all added on to my already long list of symptoms.  I'd get muscle twitches and trembles, and tehre would be times when I felt as if I was shaking or tremoring like a parkinson's paitent.  And then there was the air hunger.  Its gotten bad a bunch of times, and in the past few weeks I've been diagnosed with asthma.  I have a steroid management inhaler that I can't use because lyme loves steroids.  So I'm living off my albuterol.  Heat and humidity make it worse, as does activity. 

On June 1st, I went to see Dr. O, an LLMD who was on several lists you can find on lymenet.org.  Its a forum site, but rather than posting docs names, you request a list in your area and someone sends it to you. It seems kind of odd, but these docs fly by the seat of their pants and go against many federal regulations to treat us.  In some states, this is more serious than others.  I recently heard that MN finally doesn't have repercussions for LLMDs who prescribe long term high dose antibiotics.  I'll probably try to link to a few posts about this later.  Can't remember where they are right now.  But anyway, LLMDs have to fly under the radar for the most part.  Ours doesn't do insurance because a lot of what insurance will cover has to do with what the CDC says should be covered.  Its a big nasty mess that is really frustrating.  Like for instance, if I need a PICC line for my antibiotics, insurance might not cover it because its not considered a necessary procedure because its going above and beyond the treatment guidelines provided by the CDC.  Grrrrrr....

Anyway, my appt with Dr O was pretty good.  She was super attentive and thorough.  Very kind.  Part way through my history, she paused, I think when she saw the steroidal inhaler, to say that I really shouldn't be taking steroids with an uncontrolled chronic lyme infection.  It was like she already knew I had it before we were all done.  The light bulb was on, she HEARD us, and really agreed that my whole entire health history could very well be pivoted upon that little squished tick.  Hmmm Maybe it squished from the weight of what it eventually caused.

So that's the story in a few nutshells.  My chronic lyme disease hasn't been verified on paper yet, though I have a great clinical case for diagnosis.  This week I'm starting an abx challenge for a urine test to see if we can find them there, since my body isn't making antibodies to them in enough concentration for a positive result.  And that will be the beginning of the end of the reign of Borrelia burgdorferi!!! I may have a few coinfections as well.

I'm nervous, I'm excited. I'm determined. I'm hopeful. I'm scared.