It seems a lifetime ago since I've written.
My journey has since taken me to the mountains of new answers and hope, to the deepest valley's of deeper illness and despair, and to the quaint foothills where life seems to reside while trying to be content in all my circumstances. The climbs have been difficult and many, the falls have been excruciating and hard, but I've no choice but to pick myself back up and try to climb again. Someday, eventually, I will see that crest of good health, with the beautiful sight of a great future that will accompany it.
In the spring of 2011, I was given new energy for my climb. Not 1, but several new diagnosis of real, concrete conditions. After all, I'd always questioned the diagnosis of 'Chronic Fatigue Syndrome' and 'Fibromyalgia' as they were really only just names given to a mysterious condition in which nothing definitive could be found. These new conditions were all real and treatable!
I demanded to see a Gastroenterologist for the stomach pains that persisted with my "CFS.' An upper endoscopy was done and found polyps and inflammation. Further tests were done to explain why. A GET (gastric stomach emptying test) found I had a condition called GASTROPARESIS (delayed stomach emptying due to a partially paralyzed stomach.) A hydrogen breath test found SIBO (small intestine bacterial overgrown), likely due to the slow digestion. And, a CT scan found DIVERTICULOSIS (likely a result of the other conditions.)
On a hunch, I referred myself to an endocrinologist. After explaining my long history and symptoms in detail, plus a few simple blood tests, I was diagnosis with HASHIMOTO'S THYROIDISIS (an auto-immune thyroid condition).
With meds to get my stomach working better, and more meds to kill the bacteria, watching what I ate, and meds to get my thyroid and pituitary glands working again as they should be, I was hopeful I'd be feeling better in no time. I was hopeful that these were the keys to unlocking the energy I needed in climbing that mountain to good health.
Days turned in to weeks. My climb began slowly. Weeks turned into months. I started to slip backwards. My digestion was working again. But, my endocrinologist was struggling getting my thyroid levels corrected.
By fall, 2011, what little progress I had made over the summer, was almost gone. Sadness, hope gone. My endocrinologist told me that there was something more. My journey seemed to be starting over once again.
In the meantime, my dad was treating for Lyme Disease. He had gone through several years of similar symptoms and eventually was referred to a Lyme Literate MD (even though his Lyme tests came back negative from all the traditional tests). She found he did in fact have Lyme through new, more sensitive testing. My endo suggested I see this Lyme specialist as well (even though I had tested negative for Lyme many times over the years.)
Sept 2011: A visit to yet another specialist looking for new reasons to climb. A Lyme Literate MD gave me a clinical diagnosis for LYME, BABESIA, and BARTONELLA (not one tick infection, but 3!). This diagnosis was sealed with some positive blood tests that followed, through a lab called IGeneX (that specializes in more thorough Lyme testing) that also found a 4th tick infection, ANAPLASMOSIS.
I had, finally, after ALL THESE YEARS found, irrevocably, THE cause to all my health issues! Chronic Fatigue Syndrome and Fibromyalgia were misdiagnosis! And, there is no doubt that the tick bacteria caused the Gastroparesis (from Lyme induced nerve damage) and Hashimoto's (one of many common auto-immune conditions caused from Lyme).
I felt as if I had leapt up the mountain and was floating on a cloud! I had answers, but the correct answers this time! I was so eager to strap on those athletic shoes and run up that mountain.
Little did I know how hard this new climb would be. Harder than ever before. Little did I know, that treatments would make me much sicker before I ever got better. Little did I know, this could take years.
2 months into my new climb, taking 400mg of doxycycline a day, I fell the hardest yet. My new rock bottom. I found myself in a frightening canyon of new horrifying and debilitating symptoms that left me bed ridden yet again. I was numb from the nose down, too weak to stand, walk or hold my head up for very long, gaging on my tongue, with severe full body tremors. My thoughts: Do I now have ALS too? Am I going to die?
Angie, you need to check out the Seven Steps to Healing on my "Need healing" page of my website www.lindacheekmd.com. The infections you have are just opportunistic. They are still not the cause of your problem. You probably do have CFS and if not now, can develop fibro. But there is healing available. Granted without an income it will take a while. But you can get there eventually.
ReplyDeleteIt sounds as you may well be on your way to getting better and I wish you the very best! I, too, have had trouble finding the right dosage, etc., since being diagnosed w/ hypothyroidism. I'm doing better on that front. Further tests were done and we're still piddling around. Of course, things get especially complicated w/ my CFIDS/CFS/ME and fibromyalgia of 37 years.
ReplyDeleteOn the endocrinology front, have you had problems w/ DHEA, adult human hormone hormone ruled out? My rheumy is seeing this in what he fears are epidemic proportions. (I've written a few posts on it.)
Good luck!
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