POTS due to Lyme Disease... Who Knew?!

I have Lyme Disease…Who knew?

I mean, really... WHO KNEW!?!?!?!?

This is how I got my diagnosis… and don’t worry. This story of mine is repeated all the time throughout this country of ours because some doctors and all insurance companies do not want to treat Lyme disease… so we all get to suffer from their lack of compassion and gift of ignorance… but I digress. Here’s my story – the short and to the point version…

Close to 6 years ago, I was stricken suddenly by a mysterious illness. I all-of-a-sudden couldn't stand, walk, eat, talk, dance, go up stairs or sit without losing my breath, having presyncope episodes (pre=right before, syncope=fainting). I was achy all over. I was sweating horribly at night, waking up in pools of sweat. When I could sleep... I was "breath hungry" all the time. And I had lost all my balance, which helped me trip and fall into enough things in one summer (summer of 2007) to break my pinky toes repeatedly. Left pinky toe 8 times. Right pinky toe 7 times. And my hair was falling out, breaking off, turning dull. My skin was graying also. I couldn't drink enough water, always feeling dehydrated. My skin dried out. I fainted a few times. I couldn’t sleep. Eat. Work. Play. Nothing... And let's not forget about the brain fog. OMG. Here I'm was an educated blonde chic sounding like a real dumb blonde. I couldn't even think of the word "banana" let alone sound intellegent or remember anything anymore...it sucked the big one...

So I went to the doctors, of course, because they fix you up when you're ill. I went in for a number of things over the course of a few months:

· broken toes? doc said to tape them

· hair loss? doc says hair looks fine

· blood tests? doc says they all are coming back "normal", stop coming into office, labs cost $$$

· can't eat? doc says nothing, stop bothering me

· chest pains? doc asks if I'm crazy as a 30 something year old can't have heart attacks. go take a Tums

Then the actual Lab I had blood taken at calls me to inform me I have Lyme Disease. I go in to see my doc as they recommend I do.

· Lyme disease? doc says he doesn't know why anyone would call to tell me it's positive. It's clearly negative. Go see a neurologist

· see neurologist.. neurologist says I'm "a depressed housewife" and I "need to find my center"

...

And so it goes for close to 6 years. Continuous decline in health. More doctors. More testing. More radiation. More blood taken. Loss of not only some hair and ability to live life to the fullest, but also my own business and then, after I gain employment elsewhere, my job. Can't work, can't drive, can't breathe. This sucks. Go to tons of docs, they run TONS of tests... and for what?

All normal in range. Sorry chica.

Well, except for one. A POTS specialist I sought out after doing my own research of my symptoms. And he does a tilt table test and says I have POTS. Not that anything can be done about it as no medications work on me, but at least we have something to yell at. An acronym.

Yeah.

Well, guess what? Just this last December (2012) I stormed into my docs office demanding a new referral (the 4th one) to a new neurologist who UNDERSTANDS that no drugs will work, but will STILL work with me to help manage my POTS... I go to see him. He says he's overjoyed being my 4th neurologist - says a lot of what I've been through trying to get healthy for the past half decade. Wants to redo ALL my labs. Includes Lyme on the slip.

I laugh out loud.

I almost cross LYME off the lab list before getting my blood taken. What a waste. Doesn't he know I've been tested for LYME 3 times over the past years? And they all come back negative?

Lyme... this guy is nuts...

Then I get a phone call from my 4th neurologist.

"Ms. Mack, your labs all came back normal except for Lyme. I think that's what you've had all this time. And now that we're going to treat it, you'll feel better soon."

That was 3 months ago. And you know what? Not only did a diagnosis of Lyme - now Chronic Lyme - cause a lot of frustration and fear and trouble (aka, $$$) as no docs treat Lyme under insurance companies because insurance companies refuse treatment and there's a WHOLE new world of contraversy where Lyme is involved...but....I AM GETTING BETTER!!!!

I'll say it again... I'M GETTING BETTER!!!

No, it's not 100%. Yes, I tend to have POTsie days here and there... BUT... they aren't every day, all day. I can go a whole week before I feel dizzy, and it might only last for a few minutes.

WOW! It's totally insane to feel better again, even if only sporadically and on occasion. I went from having 1 symptom free day in 5 1/2 years to having symptom free DAYS every week... DAYS, people!

So what does this tell me? That my Godsend 4th neurologist was right. Lyme is what I've had ALL THIS TIME!

I can see the light at the end of the tunnel. It's a ways away - as I've been ill and untreated for a LONG time... but it's there.  One woman who was undiagnosed/untreated from having Lyme for 6 years said it took her 1 1/2 years to get to 100%... that's a ways a way...

but it's there...

I do have HERX days which are days the bactieria is dying off and releasing toxins, so it always feels like I'm going backward on those days. All my POTS symptoms come back and I feel 100% worse... But then a few days later, after the die-off, I feel better than I did on a previous "good" day. And my "good" days keep getting better and better. Now, that's what I like :)

So, it's a rough battle, and not one I have energy for... or money as I can't stay employed when I can't drive into work every day...or stay all day when I finally get into the office.. but I will continue to battle on the days I feel good. On the days I feel bad, I rest. Resting when you need to is a lesson that's taken me all this time to realize and learn. I'm almost at peace with letting go and resting. Almost.

It's the only way to get better. So battle on I will.