LLND Appointment

Dad & I made the trek to see my Lyme-Literate Naturopathic Doctor (LLND) on Tuesday.  We both liked the fact that she explained things clearly, didn't beat around the bush, and didn't sugar-coat anything but wasn't really grim either.

When diagnosing Lyme she looks at a variety of factors:

~ history of exposure - between our dogs having had ticks while I was growing up, a variety of bites from mosquitoes and unknown insects throughout my years, and spending the last nearly 18 years living in the sticks the risk of exposure is pretty high. 

~ antibodies - this is where the blood work comes into play.  According to the blood work done in July, I've been exposed to Lyme at some point in my life.  

~ symptoms - I have MANY and all indications show that it has crossed the blood-brain barrier and is now in my nervous system.  Which isn't news to me.  

She reviewed the vitamins, herbs, supplements, etc. that I've been taking and made recommendations on what I should continue taking and what I should add.  There were a couple of them that she said I didn't really need to continue taking.  

She also provided me with a G.I. Smoothie recipe which I'm to drink 1-2 times a day.  The goal is to calm my gut issues so that a) I'm better able to absorb nutrients and b) treatment won't be as rough on the stomach.  When I tried it yesterday it was horrible.  I changed a couple of things today and it's now tolerable.  I can't say that I really look forward to it yet, but we'll see.  It seems to be bringing back my appetite except that there still isn't anything that sounds really tasty.  Except ribs.  But ribs always sound good to me.

She offered a couple of initial treatment options.  One option is antibiotics in the herbal form.  I use the term antibiotics fairly loosely because I've heard anti-, micro-, and macro- throughout this entire learning process and I honestly don't remember which terms she specifically used during the appointment.  The other option is an antibiotic injection that is done twice a week.  This particular drug is in the family of one I'm allergic to but because the reaction is gut rejection she believes it's fairly safe to take as an injection.  The first dose will be done her office so if her belief is wrong, I'll be in the presence of someone who can begin immediate treatment.  

The injections are painful both during and for about a day or so after.  She's of the opinion that I've had pain for so long that this kind of pain isn't going to deter me the way it could some patients.  I tend to be very cautious about drugs but in this particular case I'm comfortable trying.  My folks will be at this first appointment and will be trained on how to do it properly.  From what I've seen on YouTube, this goes in the upper/outer hip so it isn't something I can do myself very easily.  Once they've learned and demonstrated how to do this safely, we'll be able to do this at home.  This round will be twice a week for three months.  After that we'll re-evaluate.  I also have the option to discontinue this course of treatment and try something else should I decide that I'm really not comfortable with it. 

Given the symptoms, the length of time I've been experiencing them, and the severity of them, her prognosis is 1-2 years of aggressive treatment.  Her hope is that I'll regain some of my 'normal' lifestyle but cautioned us that I may never be 100% again.  Before my dear loved-ones shout an expletetive at that thought, please keep in mind that all of this is happening for the good of God and He does have a plan for me and you in all of this.  We just don't know what it is yet.

It has been about 10 months since Lyme was first suspected as the culprit in all of my health issues.  In that time, I've "met" several other "Lymies" - some of whom have just been diagnosed.  I'm amazed by the number of people who are suffering from some unknown disease that eventually turns out to be Lyme.  I'm astounded by the sheer courage and mental strength I've seen among those who are fighting this disease.  I'm amazed at how there are those in the medical, insurance and government communities who insist that we're all just crazy.  Seriously, I wouldn't wish this life on my worst enemy.   

The next few weeks will be pretty big in some ways and pretty boring in many ways.  

I'm going to begin taking an amino acid that will hopefully help calm my nervous system so things that I can once again do some things that I used to take for granted like talking on the phone.  That's a wait and see deal but it's something I'm very hopeful about.

We return to LLND in just under 2 weeks to learn how to safely administer the antibiotic.  At that time she will also test for co-infections.  Most people have these co-infections and never realize it.  They only rear their ugly heads when one's immune system plate is over-loaded.  She treats with the goal of minimal herxing, too. 

Then in another 2 weeks we go back to LLND to check-in, get the results of the previous visit's blood work, and ??  

In the meantime, I've got an email out to the folks at Under Our Skin and am rounding up a crew to host a community screening of the documentary in efforts to promote awareness.  I'm not sure what the timeline usually is for something like this but it gives me something to do.  Well, something productive to do.

I began reading the most recent book by one of my favorite authors.  This book is one of several of her series so the characters are all familiar, as is the general story-line.  I'm still struggling with comprehension (I notice I have an especially hard time when I come across the occasional error that slipped by the editors) but I enjoy her books so much that I'm not really willing to put it down and wait for the day when I can read once again.  I'm also too stubborn to do that because that means it's one more thing Lyme has taken from me. 

This feels like a rather random update but random and boring seem to be the norm for me these days.  I'm a little freaked out and hopeful all at the same time. 

The TeamPersy Manual

At this point you may be wondering what you could do to help.  And there honestly isn't all that much, although prayer is ALWAYS helpful.  It would also be helpful if you could keep the following in mind that:

~ while I may look healthy,  I'm likely just having a good moment. If that's the case you can bet I'm rejoicing for that moment, too!

~ if I get forgetful, start slurring my words, or have trouble getting my thoughts across I haven't suddenly become an airhead or started drinking, it's merely just "one of those things". 

~ if you speak to me and I don't respond, I probably didn't hear you.  I typically don't hear language well these days unless I'm face to face with the person who is speaking to me.  If there's other noise (voices, music, television, etc.) then there are times that having an even remotely intelligent conversation with me isn't happening.

~ hugs are great!  As long as they're solid.  Featherlight touches are painful.  Weighted pressure is painful.  

~ I prefer to live in pain than live in a state of painful loopyness - which is why I won't take pain killers.  Seriously.  Even when my pain is the worst I've ever felt, I don't take anything.  My coping mechanism for that is to remind myself that it's nothing like being nailed to a cross.  If Jesus could do that, I can do this.  Granted, He died on the cross but that's beside the point.  

~ that going to the ER is not going to give me an answer, nor will it give me any comfort.  ERs tend to be freezing.  They have you strip down to almost nothing and give you a sleeve with sheets.  Then they start offering you every drug under the sun and the moon.  They might eventually get around to diagnostics.  In the meantime, I get so cold the only remedy is to sit in a hot bath.  If I have a broken bone, a wound that needs stitches, or something obvious, I'll hit the ER.  If it's related to Lyme, not a chance.  My experiences with hospitals has left me less than confident in their usefulness.

~ same goes for just admitting myself to the hospital.

~ the term 'better' feels like, and seems to be, a jinx word.  Makes me feel like I'm not being taken seriously.  Please do not use the term 'better' in conversation about this journey.  Of course the goal is to "get better".  "Are you feeling better?", "You look like you're feeling better", "Good I'm glad you're better", "What happened, I thought you were better?" and similar statements and questions are the most unsupportive things that have been said.  I know that they're meant with good intentions but I'm looking at a one-step-forward, three-steps-back type of journey here and I'm a superstitious woman. 

~ you're free to ask how I'm doing - if you want to know the real answer.  The answer will almost always be "I'm okay."  Which I've found can be a short and sweet phrase with a variety of meanings.  It's never a lie (I'm not big on dishonesty) because compared to the alternative I probably am okay.  I will usually follow it up with a brief explanation.  Sometimes I'm feeling a bit dizzy, exhausted, drained, have a lot of brain fog, feeling pretty good.  Other times it's simple thankfulness to not be bed-bound.  

~ I've honestly never cared too much about my weight.  Ironically, now that I've lost a lot I am incredibly insecure about my body.  I realize this is irrational but it is what it is.  Please, please, please do not comment on my body or my weight.  Some comments and stares have left me feeling as though I'm nothing but an object.  I know that in most people's eyes and hearts that's untrue.  It's just those few who have ruined it for everyone else.  

~ that I don't have a whole lot of stamina - for crowds (even small groups of 10), for noise (my fan sometimes is too much noise for me and it's fairly quiet), for physical exertion (good thing I've never been a mall rat because I have a hard time just walking from the car to the doors), etc.  It really isn't that I'm an anti-social hermit.  Living a life that 99% of the population considers normal is usually a sensory over-load experience for me.  Exposing myself to too much for too long can send me into a tailspin for weeks.  Too long can be just minutes.  

~ I don't want, nor do I need, anyone to walk on eggshells.  There's a fine line between respecting my limits and walking on eggshells.  I don't have much advice to offer other than that. 

~ that I'm fighting.  Despite my limitations, I'm not going to live in a bubble.  There have been so many days where I have been bed-bound and only able to get up to take care of basic needs that I've learned to LIVE in whatever moment I'm in.  If you're at all familiar with LeeAnn Womack's song I Hope You Dance, you'll understand.  I'm dancing.  Even though I don't actually dance.  

~ while I am choosing to live and dance (figuratively), there are some things that I won't do.  Spending the day at the San Diego Zoo, going skydiving or river rafting, etc. anytime soon would probably not be in my best interests.  Same goes for the growing list of foods that I'm known to react to.  One of which is chocolate.  Yikes!  I know.  I weigh my choices: if I do ____ or eat ____ then ____ is probably going to happen and will last for ___ days.  Is it worth it?  Sometimes it is.  Sometimes it isn't.  It just is. 

~ pretty much everything I choose to do is weighed.  

~ this disease could kill me.  The treatment could kill me.  None of us know when we're dying we just know it's going to happen.  I could beat this disease in the way that everyone is hopeful and have many years left here on earth.  If God uses this to call me home, I a) will have beat it because I'm finally whole and complete and pain free again and b) know where I'm going (do you?).  I could end up living this alternative life until the ripe old age of 100. 

~ I refuse to "suffer".  I am not suffering from Lyme disease.  I am FIGHTING.  Charging rhino, remember?  I am actually considering getting a lime green rhino tattoo.  I just haven't figured out where yet.  I did find a company online that makes temporary tattoos.  I might do that instead.  Less likely to react to the ink.  Back to the subject - the fight is also weighed.  I pick and choose my battles.  Some days I rest.  Other days I power through.  

~ I have always been commitment phobic.  There isn't a word to describe it now.  I dislike making plans because I never know when I am going to need to cancel them.  If I have to cancel/postpone/raincheck plans I feel like a liar and a flake!  Most plans contain terms/phrases such as "That should work", "tentatively", etc.  

That's about all that I can come up with at this point - which actually turned out to be quite a bit.  Hunh.  

When I Really Realized That Something Wasn't Right

I’m not sure when I contracted Lyme – it could have been while growing up, it could have been later on in life.  Not all bites result in the tell-tale bulls-eye.  However, judging by how long I’ve been symptomatic, I’ve had it for close to a decade, it's just in the last year or two that things really started to get wacky.  

2010 (and going backwards)

I went in for a follow-up appointment with a doc in April.  I had only lost 13 lbs since February.  I was down to the lowest weight I'd been since high school - and down nearly 50 lbs from the heaviest I'd ever been. 

In January I experienced some seizure-like episodes. One neurologist says they weren't really seizures because I was aware of them while they were happening.  No theory on what it was or why it was happening though.  

2009

Back in December (when things REALLY started getting frightening) I noticed that I was having a lot of difficulty with spelling - which is something I was normally quite accurate with.  When speaking I couldn't think of the right words, even when they were literally right in front of me.  If it was late and I was cold my speech would start slurring.  My hands, feet, & legs started turning blue - not just when I was exposed to the cold but heat as well.  I get some numbness and tingling in my arms and legs. My primary care doc said I needed to see a neurologist.  The neurologists - well, I won't go there right now.  

I had memory loss.  Not just the "What did I come in here for again?" kind either.  I've forgotten huge chunks of the last 10 years or so.  I know this because every now and again a wisp of a memory will flutter back like a butterfly.  Sometimes it stays and other times it flutters away again.  That could be because of age.  Except that at my age, I doubt I'd forget that my grandfather passed away earlier in the year.  Yeah - for about 14 hours I thought that Papa was still alive and kickin'.  Standing there washing a dish and WHAM! - holy coconut oil, Papa's gone to the big dessert bar in Heaven!  Not quite the most comfortable of experiences.  Shortly after that I couldn't figure out how many days were in a week.  I was (somehow) convinced that there were 8 days in a week.  The rest of me knew this was incorrect but I couldn't figure out what was going on.  Even looking at a calendar and counting the days was unhelpful!  I think I now know what amnesia patients feel like as they regain their memories and I think I now know what early Alzheimer's patients feel like when they notice something isn't right but aren't quite sure what.  

I was also freezing all the time.  2-3 layers of fleece and sweats, extra blankets, those nifty heat-packs that you can toss in the microwave, and a beanie.  That was when I was indoors, too.  I know I'm a cold-blooded woman -  I always have been.  But this is getting a bit ridiculous.

Exhausted.  Absolutely.no.energy.  I didn't do anything all day except read.  But I was exhausted.  I'd be up until 2, 3, or 4 in the morning but need to sleep for 10-12 hours.  Some wondered if it was depression.  Makes sense given the turn my life took.  Except I wasn't depressed.  I was, however, getting frustrated.  I'm too young to feel this old.  

Back in early September I had to prep for a diagnostic procedure.  Sparing you all the details, suffice it to say that my body did not tolerate the prep and the diagnostic didn't happen. What did happen though is dizziness, vertigo, memory loss, disorientation and similarly frightening symptoms/reactions.  One theory is that through the rejection of the prep I just royally messed up my system.  Ever seen a bobble-head doll bobble?  Imagine feeling like that doll on a constant basis.  I had to take Meclizine or Dramamine just to ride to doctor appointments.  I've basically felt intoxicated for the majority of the last year or so. 
 

Back in July I started getting these pin-point headaches.  It's just a spot on the top of my head that feels like I've been stabbed with a knitting needle (Yes, I know what that feels like because I accidentally stabbed myself in the leg with one when I was 12).  At first I thought they were just tension headaches because they'd start around 1700 and last until I fell asleep.  When I woke up, they'd be gone until 1700 rolled around again.  Then in August/September they'd start around 1300 and last until bedtime.  One morning in October I woke up with it and it has never gone away.  It's not a migraine, a hunger headache, a 'junk-food' headache, a stress headache or any variation of the above - I've learned the difference over the years.  I saw a poster in one of the many doctors' offices I've been in that detailed various headaches and what fits best is "cluster-headache". 

You may be wondering why this would be concerning - just take some Tylenol or another drug and move on.  It's concerning because on a scale of 1-10 with 10 being the worst pain I've ever felt, these were at a 7.  Tylenol wouldn't touch it.  My migraine medication wouldn't touch it.  Tried some heavier stuff but that just made me loopy and goofy but didn't touch the pain.  Why put my body through the toxins of drugs that aren't going to provide any relief?  Another concern is that when these headaches get worse they spread across the top of my head and forward in this web-like form.  Then my hearing and vision start to dim.  One second I can hear and the next second I can't.
 

Throughout all of this time I have seen 4 neurologists (although one was just for a diagnostic), 2 ENTs, an oto-neurologist, 2 primary care physicians, an acupuncturist (who was the first to suspect Lyme - and during the first 5 minutes of intake, too!), and a naturopathic doc.  VNG (I think I actually experienced this twice), EEG, EKG, EMG, MRI, CT, and a slew of other alphabet tests, countless blood-draws, and still no answers.  One primary care doc ordered the Lyme titer, which is known for being most inaccurate.  Then she ordered the correct test but used a lab that is known for giving incomplete results.  You might be wondering why I still suspected Lyme.  Because it's the only answer that FIT.  As one neurologist stated "There's nothing that is structurally wrong.  You don't have cancer, MS, Parkinson's, or any other nasty illness.  You just have a hyper-sensitive nervous system."  

Really?!  The fact that feather-light touch makes me cringe in pain, my diet is down to eggs, bread, potatoes, tea and water because I react to nearly everything else.  I can taste food going bad weeks before it actually does.  I can't watch television because it makes me woozy (I can sometimes watch things on my laptop - my thought is it's smaller, not as loud and so therefore isn't nearly as much stimuli).  I can't talk on the phone, attend church or other indoor functions, or anything else that's even 'remotely' loud because it sends me into a tailspin and I'm down for weeks.  Most perfumes and cleaning products close my lungs up.  Yep, I have a hyper-sensitive nervous system. 

I was also handed a variety of prescriptions - some that were even known to cause allergic reactions in patients with one of my drug allergies.  Most of those I just used as bookmarks. 
 

Here's my thought on drugs: I will use medication to treat a known ailment.  An example being thyroid.  I have a funky thyroid.  Medication makes it function properly.  Totally willing to take that medication.  I will not take something 'just to see if it works' and is therefore a diagnostic tool.  Throughout most of this experience I've come to the conclusion that many doctors (note: I did not say all) are nothing more than legal drug dealers anymore. 

Most of these experiences have just manifested over the last couple of years.  The sensitivities - for as long as I can remember.  People use to think that I hated having my feet tickled as a kid when in reality it sends hot searing pain all the way up to my head.  Folks thought I was just a picky eater.  Since I've never been one who was concerned about my weight, it isn't likely that I'd make myself vomit the meal I just ate.  Many foods just don't settle. 

A person really shouldn't have to go through the experiences I've been through just to find out what is wrong. 

In a Nutshell

After years of being unwell, a year of diagnostics with ‘normal’ results, and 10 months of being bed-bound 90% of the time I FINALLY have a diagnosis.  Lyme disease.  

I decided to create this blog for a few reasons.

   1.  One symptom of Lyme is memory loss.  This way, I won't have to remember who I included in my last update (or didn't include).

   2.  Another symptom is a hyper-sensitive nervous system.  I haven't been able to use the phone without pain since April.  Actually, over the last several years there have been times when the phone was painful.  Now it's just excruciating.  I can write though (please excuse all spelling & grammatical errors!)  Writing tends to be a good form of therapy.

   3.  Those family and friends who WANT to stay in the loop can do so here.  Those who just want to know whether or not I'm alive can drop me a text.

You may be wondering how I came up with TeamPersy.   James 1:2-4 "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance.  Perseverance must finish its work so that you may be mature and complete, not lacking in anything."  When I think of 'perseverance' I think of a rhinoceros.  Really, what would stop a charging rhino?  I decided I would find a stuffed rhino that I could cuddle up with on those days when I'm feeling horrible.  I was going to name this rhino Persy (short for Perseverance).  Days after sharing this with some of my dearest friends, I received a stuffed rhino.  The Team comes from those who have been praying for a diagnosis, a treatment plan, wisdom, comfort, guidance, helpful answers, and everything else.  

That's it in a nutshell.  I started to write quite a bit more and realized it was going to be a whole vat of nuts if I kept going so I decided to break it up a bit.