The Beginning & The End

Throughout the month of May I've been telling my health journey.  The first installment was on PCOS.  The second part was on Celiac Disease.  The final chapter - which is really the beginning of my journey - is on Lyme Disease. 


So you may remember that I met my current doctor seeking treatment for PCOS.  Actually, at that time there were many things going on -- I had uncontrolled Celiac and PCOS.  I was tired a lot, missing work & just generally run down.  I found my doctor's name on a PCOS website and called to schedule an appointment.  Before the appointment her office sent me this loooong form to fill out with all kinds of crazy questions like, "do you have a bump on the back of your neck" and "Do you have ringing in your ears."  Believe it or not, it's from some of these unknown symptoms that I wouldn't even have known to report that she knew to test me for Lyme.  She submitted me to a battery of tests --- tubes & tubes of blood.  I was truly a pin cushion!  When she sent me to Igenex for a Lyme test, I thought she was ruling it out.  It never crossed my mind that I'd actually have Lyme -- then my test came back positive.  


Lyme tests are funny.  They almost never come back positive - even when you do have Lyme.  A false negative is common, but a positive is a sure fire way to know that it's in the system.  She immediately started me on antiobiotic and herbal treatments, started allergy testing to support my immune system and had me take bazillions of nutritional supplements.  She also did testing to confirm PCOS and Celiac and started me on treatments for them straight away,


I filed for short-term disability from work - and boy was I glad.  Once I started herxing I was sick, sick, sick.  Just looking back at some of my posts like Cheater, Cheater Pumpkin Eater and Let Them Eat Cake gives an idea of how sick I was.  It very much reminded me of how my aunt felt with her chemo treatments and how my step-dad felt with his radiation treatments.  Each treatment made me sicker & sicker as the bacteria died off and released their toxins into my body.  Some days I would get up, take a shower & go back to bed for a nap.  Other days I might venture out of the house to go for an easy swim or to fill a prescription.  My husband and I were living in a small condo just the two of us so he'd come home from work to cook dinner and take care of me.  A lot for newlyweds and he really showed his fabulous true colors during that time!


A few months into treatment, we took a vacation ... a cruise to Alaska. I have to say I don't remember much except how bad I felt, but I was glad to get to see such beautiful country and a cruise seemed to perfect way to travel.  I hadn't developed MCS yet (or I didn't know it) so I wasn't worried about staying in an unfamiliar room so a cruise was a gentle relaxing way to explore.  We took a couple of excursions for which I saved up my energy and had a great time.  At that same time we bought a house and shortly began a major renovation. I had started back to work part-time and thought I was getting better.  My herxes were a pretty predictable 4-weeks apart so I could plan out work and house stuff fairly well.  My stamina was coming back and in general I thought life looked up.


Then things just dragged ... it seemed I didn't get better.  Shortly later I was found out I had Dysautonomia or CFIDS.  Dysautonomia (autonomic dysfunction) is a broad term that describes any disease or malfunction of the autonomic nervous system that usually applies for Lyme patients.  It's how I got connected with some CFS folks and started to think about my energy envelope, the spoon theory and other coping strategies.  I underwent a test at The University of the Pacific that revealed my severe post exertional fatigue.  I found out that after too much exercise my anaerobic thresh-hold (AT) drops to 117 and was advised to keep my heart rate below 117.  I heeded (and still do) this advice, but I think it's the one thing that's made me weaker.  I have fewer crashes b/c I'm not overdoing it as much -- but my overall stamina has decreased so much that less and less causes me to crash.  I'm at a total loss on how to increase it back up -- especially with all the life changes.  But ... that's another post :)


I also underwent a Neuropsychological exam that revealed my chemical sensitivities as well as some possible brain damage due to the Lyme.  For a great explanation of MCS and how one person lives with it, check out Renee's Reflections.  I can learn a lot from Renee on managing my MCS ... I take a little note of it but not a lot.  (For instance, I use unscented products in my home,stopped using scented body wash or perfume, etc.) Even paying a little attention - combined with the Lyme treatments, has lessened my mood swings and my anger but maybe if I were more careful - as she is - then I'd really feel better.


Here we are 3 years after my diagnosis.  Most of that time I continued to work about 10 hours per week until about six months ago when I quit my job for good.  I decided that I wasn't going to get any better as long as I was torn between work, family & health.  To this day I maintain that it's the single best thing I did for myself (second to treatment, of course).  I immediately took a turn for the better and until my recent crash thought I was on the uphill.  I know with work & time I'll continue to make improvements ... it's an uphill battle and my cyber-friends help me out every step of the way.