In the beginning

Sunday, March 14, 2010

I got sick in June of 1985. I was a busy mother of five, very involved and active. One night as I got ready for bed, I noted my left knee was swollen. Otherwise, I felt fine. Over the next days I got so ill I could barely get up. Several times, my doc withdrew bright yellow liquid from my knee. He said the color indicated inflammation. My sed rate was elevated but everything else was normal. He mentioned Lyme disease in passing but diagnosed me with ankylosing spondylitis, one of the "big three" forms of arthritis. I took various NSAIDS for the next 14 years.  The meds numbed the pain and I would have killed to get them. I've never been well since that day in June.

Three years later, we moved to Minnesota. When I saw a doctor to get more anti-inflammatories, she said she thought I had Lyme disease, but the the test was negative. I've since learned that the ELISA screening test is accurate only 50% of the time, and particularly inaccurate after the initial antibody flare is over.

For the next nine years, I wore long underwear, summer and winter; and never went through a whole day without a nap. I made several excursions to the hospital for migraine treatment and injections to stop the vomiting. After nine long years of freezing, fatigue and weight gain, I was diagnosed with hypothyroidism. By then, I had added 55 pounds to my 96-pound frame. Thyroid medications were a miracle for me but I still was not well.

Fourteen years from the initial onset, I was in excruciating pain and running very high blood pressure. I had a parathyroid adenoma removed in 1999. Hyperparathyroidism causes hypertension. I'd been on three meds for the hypertension and stopped all of them. This time, I was convinced I was “cured,” and felt quite well for two years. Meanwhile, the baby of five was 19 years old. She was four when I got sick.  She used to love to sit on my lap, but from that day in 1985, I never was able to hold her again.  I lost so many of the growing up years with my children. 

Gradually, beginning in about 2002, I got sicker and sicker and my blood pressure started rising again. I went through episodes of extreme anxiety, insomnia and hypertension. Each episode was worse than the last. I was in the ER three times with those episodes. Each time, my potassium was a little low and my blood pressure was sky high. Oddly, the migraines stopped.

In 2005, I went through a workup at the University of Colorado Hospital. Once the endocrinologist determined I was not Cushinoid, she lost interest. Nothing there. I'd never go back to CU. In the summer of 2008, I went to Mayo Clinic in Minnesota. Nothing there either except hyperaldosteronism, but I already knew that as I had been on a mineralocorticoid blocker. The MCB blocks the effects of aldosterone, but the other symptoms remained.  The Mayo doctor refused to talk about anything else because he said I had come for an aldosteronism consultation. He was a complete asshole.  No cigars for him. The extreme insomnia, weakness, sweats, anxiety (brittles), heat intolerance, nausea; stomach, muscle and joint pain continued. I had a thorough workup at National Jewish in Denver. They looked for every imaginable problem including sarcoidosis, carcinoid, tuberculosis, adrenal adenoma, phoechromocytoma. Nothing. The cardiologist did come close in mentioning possible "atypical mycoplasma infection" but he didn't pursue it. No cigars there either, but I found National Jewish thorough and competent for what they did.

Finally, my endocrinologist determined that I was nuts and sent me to a shrink. The shrink said, "You're not nuts; you have something organic going on." He's a smart guy and a good guy! I'm still scratching my head about how that endocrinologist decided being crazy destroyed the cartilage in my knee.

Finally, in November, 2009, I was diagnosed with Lyme disease, Bartonella, and Babesia by a Lyme-literate physician. I periodically travel to California to see him. Four months out, on Levaquin, Doryx, and now Ceftin and Rifampin, I am a little better but certainly not well. I also have that wonderful psychiatrist who has helped me with anxiety and sleep medications. Without those, I don’t think I could have made it this far. I have been sick so long, I don’t know if I’ll ever really be well again.