It is real.

I am coming up on my third appt with the LLMD and have reached the time of the month when the borrelia hit the end of their regular life cycle and a whole bunch die at once.  I am starting my third herx today and it brings a bunch of things.

As my body tingles and feels too hot, yet cold, and completely exhausted, too exhausted to even play my favorite Facebook game, Gardens of Time (which is a simple look for objects in a picture game), a myriad of feelings come to me. I get a little zing of YAY!!!! Those nasty buggers are dying!! WOOO HOOO!!!! DIE you bastards, DIE!!!!!  And then I feel sad that feeling crappy is reason to celebrate.  And its scary.

This month is a little different than the other times I've had the monthly herx (the borrelia's natural life cycle is about 30 days long and its very typical to have a large die off that happens every 28-30 days).  I ran out of zithromax on Friday and haven't gotten the script refilled yet.  I decided not to push for it because I thought a little break would be nice.  It was!  I felt comparably great yesterday!  More energy, less stomach issues, I was more alert and wanting to do things than I have been since I started treatment.

So, today I get the fevery symptoms, right on schedule, even though my antibiotic load is less than usual.  This can only mean one thing.  I DO, unmistakably have lyme disease.  There is no question in my mind.  It is very real, I can't really deny it anymore.  And it scares the bejeezus out of me.  I remember learning about it in elementary school and being very scared about such a terrible disease that comes from a teeny tiny tick.  That if you miss early diagnosis, it turns into a nasty chronic disease that causes damage so even if the infection is treated all the symptoms don't go away.  And that it can affect your heart and brain.  Very big and bad things to a young kid.  Its big and bad to adults too.  Understanding the disease more and seeing how much it has affected me doesn't make it less scary - its worse now.

I can't deny that I have at least a good year and a half of this kind of treatment.  A year and a half at minimum of feeling this rotten and tired and unable to eat (which does have its benefits, I have to admit - at least when you're wanting to lose weight).  I worry about when insurance will stop covering my meds and monthly blood tests to be sure my organs are handling treatment ok, and I worry about how we''ll pay for it all.  I worry about my daughter having it too, because I was infected before Button was born, and lyme can be transmitted from mother to unborn child.  That possibility makes me sick in and of itself.

But, I ahve to stay on the bright side, need to take life day by day instead of looking at the big picture.  Sometimes I even need to just stay in the very moment.  Remind myself that every day is different and that it is GOOD that i'm treating my lyme.  That I will improve.  If I look at it from the dark side, I won't be able to make it.  Nobody could.  So I'm trying to focus on the good things to help me along.

So, good things for today are:
the bugs are dying!
Lizzie was really really good this morning when I wasn't able to wake up
my husband is always just a holler down the stairs away
I have loving pets that keep me company while I rest
Lizzie still takes a big long nap in the afternoon so I can rest too
I have family, friends and neighbors who are very caring, loving and helpful

And I could go on and on, but this post is long enough already.

Second LLMD appt and playing with plaquenil

I had my second LLMD appt last week.  I really would like to state that I LOVE THIS LADY!!!!!  She is very thorough, and loved that I wrote out which symptoms changed.  She went over my whole symptom list, the lyme symptom list, and a general body systems list in addition to a physical exam.  I'm doing ok.  Not stellar, but not terrible, just like I thought.

The fact that my lab tests came back negative does not change the fact that I have clinical chronic lyme disease.  Nor will it change our course of treatment.  Having a herx reaction right away cements that I do in fact have lyme disease, because they only occur with spirochete infections. 

While going through the system check, she touched on thyroid.  I mentioned my maternal history and the fact that I have several hypothyroid symptoms, yet all my labs have been within the normal range for years.  She said, "Sometimes people have slow metabolisms and do better on a low dose of thyroid meds even though their labs are normal."

I nearly fell off my chair with excitement, because I have read that before, but had never come across a doctor who believed it!  So, she instructed me to take my temperature 3 times a day and take the average of them.  A low temperature is proof of a slow metabolism, and if I do this, she will be able to prescribe me some synthroid to try!  I am SUPER excited about this prospect, because I have thought and wondered about this for years but nobody was willing to help me.  So far, my temp hasn't even hit 98.6, even when I've been feeling feverish.  Most of the averages are 97.5.  However, each of my afternoon temps are higher than the others, which I believe is a symptom of lyme & co in and of itself.  I'm looking forward to the next appt to see what she says!

Since I have had so much gastric upset and sun problems with the current dose of azithromycin, she kept it the same.  Thank GOD!!!!!  She wants me tolerating it well before we increase it.  My stomach seems to be doing a bit better on it in the past week, so maybe next month it will go up.  She also added in 400 mg of plaquenil each day, giving me the instructions that I can take it as I wish (they come in 200mg tablets), as long as I get the 400mg each day.  I've been playing around with that, starting it on this past monday, because we had a big trip planned for that weekend.  She suggested that I find a good refrigerated probiotic, as it helps keep the organisms fresher.  I just started a new pack of 30 of what I currently have, so I'll do that when I'm done with this stuff.  I seem to be doing fairly well on that front though.  She also suggested I start taking chelated magnesium, for all my aches and pains, up to 2 grams daily, as I can tolerate.  I'm still trying to find some good stuff.

The plaquenil is something fierce!  It has caused me moderate nausea (its bad, but I'm not puking from it) and the bugs really don't like it.  I have tried taking it a number of different ways.  200mg with the rest of my morning pills causes too much nausea.  A late morning dose and early afternoon dose (without anything else taken with it) was pretty bad nausea too, and I ended up with the biggest herx I've had yet.  Yes, its good, cuz it means the bugs are dying, but its also bad to have to endure, and the neurotoxins can actually cause damage if there is too much of them around for too long.  So today, I'm trying out taking the entire 400mg with dinner, so I avoid mixing them with other meds, and I can sleep through most of the bad stuff.

Taking them with a big meal has helped with the nausea, but it has caused quite a bit of gas.  Interestingly enough, I'm starting to feel my cheeks flush just 2 hours after taking it.  Pretty soon its bedtime, so we'll see how I sleep and feel in the morning.  I'm hoping its a go!

I really want to kill these damn buggers, but it would be nice if we can avoid a repeat of yesterday.  I needed to stay in bed most of the afternoon and evening, and had to abandon making supper, right in the middle of things.  I've been trying to be prepared for things to get worse, but now that that reality is looking me in the face, I have to admit I'm kind of scared.  I couldn't take care of my family, and it was all I could do to get up to go to the bathroom or get a drink of water.

Today I've been feeling much better, my body felt lighter and I didn't hurt as much.  If I can time the plaquenil doses right so they do the killing while I sleep, this might be a doable arrangement.  I want them GONE, but I also want to be able to function.

A day in the life

Have you ever wondered what it feels like to have and be treating lyme disease?  If yes, read on.  If not, you can skip this post, cuz I'm kind of feeling like this is going to end up being whiny.

I'm feeling really rotten right now.  My hands ache - along each and every bone and in every joint.  My ankles and low back are joining in the ache chorus too.  A few minutes ago I felt the need to sit down on my kitchen floor because standing up was just too much and I didn't have the energy to complete the task I was in the middle of (getting Lizzie some juice).

I'm exhausted, feeling like I could curl up and fall asleep at any minute.  I'm counting down the time until Lizzie's nap, so I can take one too.  I just realized my ginger ale isn't right next to me and I have to get up and get it, but I'm not really feeling up to doing that right now.

All of Lizzie's activity and sounds (constant chatter and singing and general noise making) is making me feel overstimulated.  I had to tell her to go and sit on the couch instead of at my elbow a little while ago because when she bumped me, my whole body tensed up and I felt very anxious and crowded.

I feel like I'm going to puke or have diarrhea, alternately (medication side effects).  My lymph nodes ache and I'm feeling chilled. Yesterday I felt like my cheeks were flushed and I was feverish.  This is GOOD news, as it is a herx reaction, so it means I'm killing the buggers!  But it still feels like the flu.  Thankfully its pretty mild.

All this together makes me want to hide in bed and sleep.  But, I'm a mom and have a 3 year old to keep busy and out of trouble and a house that is begging for attention.  So I can't quite run off.  Maybe throwing a blanket over my head and body might create the illusion of hiding for a few seconds.  I should try it!

Talk with doctor

The doctor just returned my call, and upon explaining my symptoms from last night, she said that yes, it does sound like I killed some bugs! 

I'm to get a urine sample today or tomorrow, cuz we want to catch the dead bugs, and it takes a bit for them to clear the blood stream.  So hopefully, we'll get some!!  And I'm to continue the abx (antibiotics, for short - I'll be using that abbreviation a lot), and get samples on days 5 and 6 like planned.

She mentioned something about plaquenil, and how I"ll probably be put on it in the future.  I wonder how that fits into lyme treatment....  I'll be looking into it so I can be ahead of the game!  My next appt with her is July 7th.

I'm doing a big happy dance!!!

Oh and I'm not feeling flu-ish this morning.  Just a few random aches that move and stuff.

Annnnnnd..... I spoke too soon.

Very shortly after I posted my last post, I think I started my first herx reaction.  My forearms and hands started hurting - aching down every bone and in the muscles.  Not too intense, but noticable.  And a few moments after that, I started feeling chilly cold (however, it was right after Jared opened the windows and its cool and breezy).  I put on a shawl and some socks as I started to feel like I had the chills, and it soon turned into feeling too warm and flushed.  You know the feeling, when you are coming down with something and you get the chills along with a fever.  Its still all pretty mild, but I can tell I'm not feeling right.

What I'm referring to is a Jarisch-Herxheimer reaction, http://en.wikipedia.org/wiki/Herxheimer_reaction, (aka Herx) your body's reaction to toxins released by a bacterial die off.  Essentially, the bits and pieces of dead spirochetes overload your immune system and you feel like you have the flu.  Its a good thing cuz you know the bacteria are dying, but the toxins can also cause physical damage, so you need to be careful with them.

My dr told me that if and when I Herx (all but 15-20% of people with lyme have them), I need to stop my antibiotics until it passes and I should call her so we could discuss changing doses of meds.  Since I'm doing the urine test protocol, I'm going to take tonight and tomorrow morning's doses and call her.  I'm guessing that she didn't expect a reaction on the first day, so we'll see what she suggests.  I have no clue!

I am known to have a pretty sensitive body.  I react to meds in odd ways and at small levels.  I remember when I had my night guard for my TMJ issues adjusted, the tech always said I was amazing at determining minute differences in where my teeth met.  I think its just that I notice very small changes in my body.  So it doesn't surprise me that I feel symptoms flaring up right away.  Is it an actual, full blown herx?  We'll see what my doc says tomorrow.

For now, I'm having a mix of emotions.  I'm kind of excited, and validated!  This would mean that there actually IS something in my body that is dying from the antibiotics!  That even if I haven't tested positive for lyme and its co-infections, chances are good that's what we're dealing with.  It means that at least one of the drugs is doing its job and killing those buggers!  But at the same time, I'm kind of nervous and scared.  Cuz yeah, I DO have lyme disease, and I bet this is just the tip of the iceberg.  There's a LOT more of this to come, possibly years. 

But I'm feeling optimistic and strong.  I find myself yelling at them, egging them on.  "Oh yeah?  What, you're getting scared?  YEAH!!!! You better be scared! DIE BORRELIA!!!  There's plenty more where this came from!  Bring it on you little fuckers, bring it on......."