About Me

I read a sign once that said, “If you want to see God laugh, tell Him your plans.”  Amusing, huh?  I had no idea at the time how much that would apply to me.

In October 2002, my husband and I visited my cousin in New Hampshire.  We were there at peak “leaf” season, and it was absolutely breathtaking.  We hiked the trails of the white mountains, saw “the old man in the mountain” and just had an incredible time. 

Little did I know that while I was having an incredible time in the mountains, a deer tick had evidently dropped onto my head and was having an incredible feast on my scalp.  The little devil then purged Lyme and three other tick-borne diseases into my body before just simply leaving.  My hair is INCREDIBLY thick — so even if I had the tell-tale “bulls-eye rash”, I wouldn’t have known it.

I developed “the flu” or also caught what I thought was coxsackie virus from one of the siblings of a child I was treating.  She was sick and daycare wouldn’t let her go there, so her mother just brought her into my clinic!  I’m a physical therapist.

Let me preface this part with:  I am 6’1″.  When I first started getting sick, I weighed between 138 and 145 pounds, I was 11% body fat, and I could LITERALLY bench press my then-seventeen year-old son.  I was treating patients of all ages, but REALLY had fun with my pediatric patients and “rehabbing” the injured athletes that I did.  It was a challenge.  It was HARD.  And, having to “prove myself” to macho athletes and rising to that challenge was just plain fun!

As I began to get more sick, and more doctors came into the picture with more diagnoses, life became much less fun.  I was having to cancel patients because I just couldn’t keep up with the pace that I had been.  My husband and I were having to take out loans just to keep my practice open and the bills paid.  My life seemed to be heading in a downward spiral.

I ended up having to close my practice because I was just too sick — and too uncoordinated, too weak, too everything — to keep working.  I remember telling my husband that he didn’t have to go with me to the neurologist that my primary care doctor said I had to see — it was going to be no big deal.  As a physical therapist, when the testing he was doing started showing the signs that occur with ALS – Lou Gehrig’s disease – when my eyes met his, I remember bursting out in tears. 

My mother was with me, and she told me not to cry that everything was going to be okay – that this was fix-able.  The neurologist had known me from school.  He said, “Your daughter is a very intelligent woman.  She knows what the results of these tests mean.  Let her cry.  She needs to do that.”  What an ominous feeling.

I remember that when I returned to his office, my husband insisted on coming with me.  We discussed a LOT of things.  The neurologist told me that he had a feeling that my condition was going to be a very odd, complex combination of 2, 3 or more individual diagnoses.  He said that his hope was that I could find a very young, ‘hungry’ physician or resident who would take the ball and run with it in the hopes that he would be able to get published.  He said that he was just too old and his practice was just too full to be able to delve into this in the manner it needed to be.  He even tried helping me find someone who would thoroughly look into what was causing all these diseases.

Unfortunately, the physician I alternately saw was of — well, absolutely no use.  In retrospect, I think he just wanted to pass me off as a head case and be done with me.  I gave him my medical records from Johns-Hopkins, the Mayo Clinic, my geneticist — but he was never able to “find” them in my chart.  He even stated that in a letter to my primary care physician — that I had never made them available to him!  He gave me one diagnosis, and despite my adhering to the diet it involved INCREDIBLY STRINGENTLY, I was continuing to get worse and worse.

It didn’t help that my every-three-month visits were becoming increasingly frustrating with this doctor.  I would hand him very valid research articles – from Medline – the “premiere” site for medical research – and he would just lay them on the counter.  I’m sure they all fell into the circular file after I left, because I never saw them in my chart again.  I asked question after question — on three different occasions I asked him about the bizarre mold we had in our house.  On each of those occasions, I was responded to with the same eye rolling, heavy sighing head shaking that he did when I would question the white lesions on my cortical brain or when I would tell him that I couldn’t put my chin to my chest.  I wasn’t telling him what I thought I HAD, I was asking him to diagnose me based upon what were not just SYMPTOMS, but were physiological SIGNS.  My frustration would just escalate exponentially.

In October of 2008, I met with friends that we had all only known on-line until we decided to gather at a cottage at the Outer Banks that one of the women had been given a for a week.  She graciously offered to host our visit there.  One of the women — a younger girl — had Lyme disease.  My best friend — who I had finally met in person (she lives in Ontario) — kept giving me the nudge with “You have that” . . . over and over.  That was the trip that literally saved my life. 

I had a fairly bad seizure one night when I was having to control my vision while I was chopping vegetables, there was a ceiling fan, I believe, and it set off the seizure.  I had another seizure that landed me in the hospital while I was there when my son and I were fishing on a pier.  I think watching the ever-increasing intensity of the waves – along with watching the rip-tide that was occurring set that one off.  Who knows? 

When I got home, I emailed another friend of ours who couldn’t attend because SHE was battling Lyme disease.  She had lived in New Hampshire, and had developed a really NASTY case of the disease.  When I received her response, she and I were both shocked that we had never thought about it.  I was able to get in to see her doctor in Mid-December, 2008.  I had my first port inserted into my heart on December 30, 2008 and I started antibiotics in toxic doses — considered “chemotherapy” — that very day.  My life has not been the same since . . .

I say that, though, in a GOOD way.  While, yes, there are days that I literally can’t move, I am also getting much much better.  There are things that are permanent — I have been more than warned about that.  I sustained an awful lot of damage to my brain in the six years I went misdiagnosed.  But I am alive!  I can play with my granddaughter — and will be able to play with the one that is on the way — and even  though I still need my wheelchair for shopping or going places where I would have to walk some distance, I am no longer completely wheelchair-bound!

There is a place in my heart, though, that feels very, very empty.  That is the place that I don’t like to visit.  It is the one that reminds me that I will not be able to practice Physical Therapy again.  It really is going to be physically impossible.  I can’t white-water raft again?  Okay — at least I got to experience it.  I can’t climb mountain trails any longer?  Well, it was fun when I could.  I can’t cycle miles and miles and miles on Saturday and Sunday mornings any longer?  Well — I got to do it and it was fantastic.  But not practicing Physical Therapy again?  That’s the one that I haven’t gotten over.  It is also the one that I don’t think I’ll ever get over.