Monday, November 3, 2008

A New Journey

On Thursday, after years of illness, I was diagnosed with Lyme disease. Previous diagnoses included Lupus, mixed connective tissue disease, Sjogren's syndrome, Scleroderma, Raynaud's syndrome, posterior orthostatic tachycardia syndrome, migraines, neuropathy, hypermobility syndrome, TMJ, carpal tunnel syndrome, ulnar nerve compression, chronic fatigue syndrome, fibromyalgia, antiphospholipid syndrome, intermittent hearing loss, arthritis, Candidiasis, hypoglycemia, degenerative disk disease, Epstein Barr and human parvo viruses, median arcuate ligament compression syndrome, eschemia, Bell's palsy, chronic sinus, ear and urinary tract infections, trigeminal nerve involvement, joint pain, costalchondritis, mild foot drop and possible vasculitis of the small blood vessels. M.S. was on the horizon. At the time of my diagnosis, I had experienced all but four of the nearly 75 symptoms listed on the CanLyme web site, a Canadian source.

There is an excellent essay on Lyme disease written by John D. Bleiweiss, M.D. in April, 1994 I came across a few days ago and found interesting. I was surprised to read "a sudden acceleration of encephalopathy, headache and dizziness, thought of as putative post-concussion syndrome, can be evoked by head trauma." I experienced a very similar situation in 1991.

I was once told by a physician, "We're like the bunch of blind men in a room with an elephant." My internist was turning to philosophy because he is a compassionate person and it was the best he could offer.

I am so grateful for my training as a biologist and scientist and for my friends and family who have helped with me throughout this. I am thankful for the compassionate doctors who tried to make a difference. I am grateful to my neighbor, who, a year and half ago said, "Kim, the only time I had a headache like that was when I had manifestations of Lyme disease."

I am grateful to my hairstylist, diagnosed with Lyme, who would know my symptoms before I would walk through the door. We joked that either she had Lupus or I had Lyme because we certainly had the same thing.

I am grateful to my friends at physical therapy. Thank you for making a difference!

I am grateful to my naturopath who saved my life twice. I am also grateful that I finally met a doctor who's experience allowed him to make a diagnosis where so many have failed. He is finding things others have missed because he knows what to look for.

I will be receiving intensive therapy during the next six weeks and am so grateful to those who have done so much to help us through this. I take comfort knowing that we are finally treating the underlying problem. It will make being away from my daughters a bit easier.

Wishing you life's blessings.


Marjorie Tietjen said...

Hello....I just recieved your blog in my Lyme google alert. I have most of the same symptoms and diagnoses that you have had...including POTS. I am so glad that you have that attitude of gratitude!! It surely helps one recover. In case you are interested, you might want to check out my blog at

Jenna_Smith said...

Hi There - My heart goes out to you! I have a severe case of Neuro-Lyme and have been bedridden for 2 years after many, many years of illness and "pushing through pain" - sound familiar?
I publish the most up-to-date info on Lyme as well as several free ebooks at
I would also recommend joining some Lyme Forums - they are great for support during the long recovery... God Bless! Jenna

huesofnature said...

Thank you both for your help! I will check out both of your sites. Sending my best to you in your recoveries!

Jenna_Smith said...

By the way, I meant to tell you before that I LOVE your dragonfly! Here in the mountains of Western Maine we have a spectacular range of size and color - they are a symbol of good luck for me. May I download a copy of it?


TheSingingBird said...

blessings to you and your family, may the best treatment for your body bring you back to good health.