Lots of Changes

My last appt has brought me lots of med changes.  We doubled the zithromax, so I'm now taking a gram of it a day.  We added back in the amoxicillin, like in the antibiotic challenge test at the very beginning - 1 gram, 3 times a day.  The probenecid will probably be added in next month provided that everything is tolerated.

I asked her what her definition of tolerate is.  According to her, I am tolerating things provided I am not vomiting or having diarrhea many times every day.  I have to be completely honest and say that I was a little disappointed. *LOL*  But, at the same time, it IS good to know where she draws the line.  Clearly, I am not to that point yet, so we forge ahead!

Next month I will also most likely be starting an herb called artemesia.  It works against babesia as well as borrelia.  I am to do some research, learning about it, looking at different protocols for dosing info and stuff, and seeing what form is available to me.  Interestingly enough, artemesia is wormwood.  And distilled wormwood makes absinthe.  You know, the liquor that has the reputation of causing hallucinations and craziness!  I find it intriguing that absinthe can have (depending on how its made) those negative effects on us and it comes from the same plant that kills babesia.  It is also used in some malaria treatments as well. 

Both babesia and the critter that causes malaria are protozoans that live in blood cells.  So a lot of the treatments are the same or similar.  Hence the plaquenil I'm on, being used as an antimalarial, and the artemesia.  And, interesting still is that they both can help fight borrelia too.  I don't know about the mechanisms of artemesia yet, but plaquenil raises the pH of the vacuoles in cells, which makes them inhospitable to borrelia. 

We added in the amoxicillin to target the form of borrelia that has a cell wall.  The zithromax targets the form that doesn't have a cell wall, and plaquenil gets the cyst form out of the cells.  So I'm really hitting them with big guns now.  When we add in the artemesia and probenecid (to raise the plasma level of amoxicillin), I imagine they'll really be unhappy.  YAY!!!!

Another big change that I have been so excited about is that I now am taking a thyroid supplement too!  For a decade, I have been wondering if a lot of my symptoms have been from an underactive thyroid, or messed up thyroid metabolism.  And finally my lyme doctor knew to look at what is going on with my body instead of focusing on lab results.  She had me take my temperature 3 times a day for a month (I have to admit I probably forgot as many times as I remembered) and it turns out that my basal body temp is a good degree below normal (98.6).  So she gave me a script for Armour thyroid.  It is not synthroid, a synthetic form of T4, but rather a mix of both T3 and T4 that comes from ground up pig thyroid.  Its the actual hormone, not a manufactured version of it. It kind of grosses me out a little, but if you really think about it, its no different than eating meat.  Its not like I'm eating a raw organ - its been processed and stuff, and we use animal products for practically everything.  I take it twice a day, an hour before I eat anything.  I'm also supposed to continue to do the temp thing, probably to see how my metabolism responds to it.

So far, I do feel like I have more energy, a higher desire to move and get up and do things.  However, when I actually get up to do stuff, my body protests.  While the underlying drive to do things is higher, my body's capabilities to carry out tasks has not improved.  So its kind of frustrating, but I deal.  My temp has increased a bit too.  A day or two after I started, it jumped almost a whole degree!  Usually, when my temp goes up like that, I feel sick.  Not this time!  So its definitely doing something.  However, the last few days, it has gone down a bit.  So maybe my temp increased because of die off or something. 

These days I live by the clock.  I bring a thyroid pill to bed with me, so I can take it before I get up, so I don't have to wait as long to eat breakfast.  An hour after I take that, I take my morning pile of pills with a protein shake made with kefir - a great source of probiotics (pbx).  Antibiotics (abx) can't be taken with pbx, or you might as well not even take the pbx.  You can take pbx an hour before abx, or 2 hours after abx.  Its so complicated!  So I can't take my morning abx with the rest of my morning pills because of the pbx I have with breakfast.  An hour after breakfast I take my morning abx.  Since I have a lower dose of pbx, I take it 3 times a day, so I have another dose 2 hours or so after the morning abx.  Around 2 or 3, I take my second thyroid pill and another dose of pbx. At 4 or so is my afternoon meds and abx. I have to be careful of the timing of the thyroid and afternoon abx because I need to take food with the abx so I don't get as sick, but the thyroid needs an empty tummy!   By 6, its another dose of pbx.  Then around 8 I take my night pile of pills.  Is your head spinning yet? *LOL*  Thankfully, I have found a cool iPhone app that helps me set up a series of alarms and a checklist to keep me on track.  But I just about had a meltdown trying to figure out the correct sequence and timing at the beginning!

I am also supposed to add in a magnesium supplement, but my list of meds is long enough as it is!  I don't want to have to keep track of yet another thing.  Besides, my pill box won't fit any more pills!  I'm gonna need a new, big one soon.  One with multiple boxes for each day.  *sigh* Its rather depressing to think about.

But, beside the med side effects and die off side effects, I have been noticing improvements!!!

My air hunger and chest pains are almost all gone.  My night sweats are almost gone.  My anxiety is lowered.  My headaches are drastically lowered.  And my pain feels different. Its more migratory and fickle, not quite as anchored down in my body.  I don't think I'm quite as hypersensitive about things either.

So its definitely great to see some progress when the meds make me feel so gross and tired.  It makes it feel worth it and gives me some hope that some day my life and abilities will be much more reasonable.

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.