Monday, September 28, 2009

Monkey Girl's Story...part 3

I was newly labeled...a Lyme Disease victim.

There is always a certain sense of relief that happens when your doctor finally gives you an answer.

Of course, I was still skeptical.
Only a few months before I'd been labeled with fibromyalgia and a few months before that labeled with autoimmune urticaria (hives).

My Guardian Angel (my father) must have been working hard that day.
My ND just happened to have gone to medical school with someone who was an up and coming LLMD and had been treating Lyme patients with her partner (an MD) for the last couple of years.

My ND made a personal call to her, and viola, I had an appointment with my LLMD in two weeks.

It really wasn't until I also tested positive for Bartonella and Babesia duncan i, that I finally let my diagnosis settle in my bones.

For those two weeks, I did nothing but research Lyme on the internet, sleep restlessly, and freak out about my new diagnosis. Even though I have a close friend who also suffers from Lyme Disease, and had seen her struggle with treatment for the last 5 years, it was still difficult to wrap my head around my looming future.

I knew enough about Lyme to know my treatment was going to be a long up-hill battle that could potentially go on indefinitely. I knew the future wasn't all lollipops and rainbows.

My first appointment with my LLMD proved to be exhausting and financially draining (haha). I got referrals to a pain specialist, an optometrist, and a psychiatrist.
My pain level was at a constant 6.5, my eyes were giving me so much trouble I had to close and rest them at least 15 minutes every hour or two, and my brain fog and memory troubles were effecting my ability to finish my classes and read more than a sentence or two at a time.

I already was in pure hell...or so I thought.

My LLMD first order of business was to put me on 3 months of Levaquin for the Bartonella. Yippee!

It's been 18 months since my diagnosis.
I've had severe highs and lows.
Good days and days I don't move from my bed.
Allergic reactions that have put me to the edge of my sanity.


...and still I am fighting.


And for all those other Lyme sufferers out there...

"But you look so good."

It's no wonder we suffer from Lyme rage.


peace and health,

Monkey Girl

7 comments:

btrflynana said...

Hang in there and keep up the good fight! Get your t-shirt made! ;)

I find there still are times where I let denial jump back into the picture for a while...Maybe it's because I have only been at this since Feb...LOL that denial is so short lived as reality hits and it's "duh...I really do have this blasted disease"

I can so relate to what you've said!
btrflynana

Ashley said...

I was so relieved when I was diagnosed with Lyme. Not that I wanted Lyme but I finally had something that I could tell people.

I'd been sick for 10 years with no diagnosis well, IBS and high strung if those count.

It's hard but at least we are moving forward.

Alix said...

Monkey Girl, I love how you sum it all up with "no wonder we suffer from Lyme Rage."

So much of your post rang true to me, too. I went into Lyme denial for two years after getting my first tests back. Partly because I didn't like the treatments and partly because Stanford ID dismissed my tests. It was convenient to believe the Stanford MDs so I wouldn't have to do the antibiotics that I thought were the only solution, but which I knew I couldn't tolerate.

I'm curious what your eye symptoms are. Mine get really red and irritated, especially in the mornings. People used to ask me all the time "are you ok?" because of my eyes. Still do sometimes. So frustrating.

Monkey Girl said...

My particular eye problems are, dry eye, red irritated eyes, floaters, worsening vision, they just get really tired and I didn't understand what was going on. My LLMD explained it really well (and then my optometrist), Lyme patients eyes tend to repetitively dilate,I forget which co-infection has this effect, but I'll ask her again this month. In essence, your eye continues to dilate throughout the day, which of course, tires the eye out quickly. Eye issues are not uncommon with Lyme. My Lyme doctor now refers her patients for eye therapy regularly.

In addition, I have one eye (right one) with decent vision and then my poor left one (the lazy one) with crappy vision. Hence, the new glasses.

Kara said...

Just found the blog today and LOVE it! Thank you for sharing your experiences ... the honesty brought me to tears. I had a "mystery illness" for 6 years prior to my Lyme Diagnosis in Nov 2007. Looking back at my history, we think I've had Lyme for approx 17 years.
I've followed Monkey Girl's blog for a while but never read her story. Thanks for sharing it here! Yes, the "No wonder we suffer from Lyme rage" rings true for me, too. At least I can laugh about it now ...
Keep up the great posts! It is so nice to read others' stories, in that, I can SO identify with what you are going through and have gone through. I have experienced much of it myself. I still cringe inside when I think of all the knot holes my body has been dragged through that were so totally unnecessary. And three years worth of pure torture the Lyme put me through. If only, a doctor had caught on that it was Lyme 6 years ago. ~sigh~
Onward and upward for me! Each small step brings me closer to recovery. The biggest challenge for me right now is severe chemical sensitivity. I'm going at it from a different direction right now and I'm really improving quickly. So it's very exciting.
Hope you are all having a "good" day! {{HUGS}}

Kim said...

Kara,

Thanks for stopping by! I think I've had Lyme, bartonella, and babesia for 20 years--since I high school. I don't think I know what normal is. And as sad as that makes me, I'm also encouraged. Maybe I'll kick this and will feel better than I have my whole life? Have you tried glutathione for your chemical sensitivity? It seems to be helping me...

Alix said...

Kara, great to have you here and love that you are enjoying our posts. I hope you make a dent in your chemical sensitivity - that's a tough nut to crack. Let us know what you are doing for it and if it's working.

I just had to vacate our house because our neighbors were bombing termites with Vikane. The MSDS was scary so we moved out for a few days. I don't know if it would have affected me with chemical sensitivities (though I do get a headache in heavily scented stores, like Z Gallery), but I was worried about adding more neurotoxin to my huge load.