Friday, January 16, 2015

Anybody New to Lyme Treatment

You finally figured it out.  Congrats, against all odds, especially if you live on the West Coast.  Years of visiting doctors and innumerable health problems later, it comes together.  You have Late Stage Lyme Disease.  The sensation you feel most, is likely fear.  Although happy to have finally found an answer, you are apprehensive about starting treatment.  You're a smart one, you start doing what you've always done, but this time you search You Tube and Lyme blogs not looking for symptoms, but looking to decipher what the course of the next few years may be like for you.  You see an abundance of colors written in many tones across the web.  This only makes you more anxious and very scared.  The stories out there about Lyme Disease are terrifying and very true, but the crazy part, is that somehow you've just entered into this haunted hayride and there is no looking back.

Taking the plunge into treatment is the only option, you want your life back. 
So, I'm here to tell you that it might not be so terrifying.  You've already felt like shit for as long as you've had Lyme Disease, right?  So what's a little more feeling like shit going to do?  It's going to make you feel better in the end!  Every time I feel crappy during treatment, I smile, because I know i'm killing those little fuckers swimming around inside of me. 

I am here to give you hope and to tell you that my treatment is going insurmountably well, thus far.  My LL was a little worried I'd have some die-off reactions, which I've had some.  But nothing major, nothing that has ended in a hospital visit.  I started with child-like portions of drugs, and have now increased to adult dosages, nothing to intense though.  Sometimes I think I'm being naive, just ahead there could be embers ready to implode at any given moment, or I doubt the drugs are effectively doing there job.  I have these instances that I can only compare to what it's like when you see a glitter on someones face, a little sparkle or fleck of light. It's how I know my treatment is working.

Here are some sparkles I've noticed in just 2 months.
I am doing well on antibiotics!   Every Lyme patient reacts differently to antibiotics so you never really know what to expect during treatment.  You absolutely need to go into treatment thinking POSITIVE.

My skin color is coming back.  For the last four years my skin tone has been ghostly white, with blue veins that crept so close to the surface of my skin, that I thought my pin, from my allergy scratch testing, (that I do on myself) would puncture the veins.   I envision blood flying over plastic tarps, as if i'm lying on a cutting board in the middle of a Dexter episode.
Berries being tested on my thigh, so the scratches 
are less visible to the public :)

Do not eat nectarines.

(Scratch testing with foods before I ate them allowed myself the freedom to avoid uncomfortable eye/throat swelling.  Which would happen at the worst of times throughout my day, and with any given food item).

I can eat an avocado.  I couldn't do that 3 months ago.  One more food added to my small list of "safe" foods.

Things are changing.  Things are not perfect by any means, but I can tell that my hormones and thyroid are balancing.  

I can still work, although I am limited to four hours in the morning.  You can still catch me spandex dancing all over the gym, running around, being my bossy self.  Anybody who happens to witness this, would not have a clue that I am currently undergoing treatment for Late Stage Lyme Disease and consume over 50 pills a day.

Some days I may be tired or I feel like shit, my stomach may hurt, or my eyes might be in pain or swollen. Being aware and paying attention to your Lyme cycle helps.  If you are more in tune with your body, you may notice that you too, have a Lyme cycle.  My cycle happens to line up with period week, and the week before period week, they tend to be a bit rougher symptom wise.  Also, starting new antibiotics or upping dosages makes me more sleepy for a week.  Pay attention to cycles and plan your life accordingly.

I can accept myself a little more each day.
Many Lyme patients do not like to hear the phrase, "But you don't look sick."  Personally, I would love to hear that phrase, but I haven't much, because I do look sick.  Every morning when I look in the mirror I see what Lyme Disease has done to my body externally, and I can't fathom what has gone on internally. I used to get angry and cry because I didn't understand the changes that had taken place.  There were lots of days I felt to ugly to go into the world, and would bury myself in blankets all day.  Today when I wake up and look in the mirror, I simply observe.  I note the changes on the outside and I know that the inside is initializing the transition.  I might wake one morning with an eyelid that is sagging so low it knocks against my lashes, making it hard to keep my eyes open.   On mornings like that, when I don't feel confident looking in the mirror, I go back to the main source of the problem and I'm okay with it.   Being aware that these horrible symptoms are the source of Lyme Disease, calms my anxiety.   I put my war paint on, head out the the door confident, and as nonjudgmental of others as I can be.

Those who pursue long term treatment for Lyme don't take no for an answer and will not back down easy. You could have trained for years, but this is the marathon of a lifetime and it's only just begun. On the rough days, all I have to think about is the amount of pills I consume on a daily basis and everything I've given up in order to kill these little fuckers.  My own drive to get better and my will to kill this monster, is what keeps me going.  If you've got drive and optimism, then you have a reputable case against Lyme Disease.  Good Luck.
It's you against Lyme :)
Thanks for reading,
Becky Smith