I am Cara, previously known as Carrie J (nickname), whose screen name is now spaztick. I am the one who started this thread in 2007.
Wow, I don't visit this forum often, but I did today!
Update: The pieces of the puzzle finally came together ~ It's LYME disease!
I saw a Lyme Literate Medical Doctor (LLMD) several times starting September 2007.
I was diagnosed clinically (based on symptoms) with both Lyme disease and Babesiosis.
My Canadian blood work was negative. My Igenex (California) test for Babesiosis was positive, and my Western Blot results for Lyme disease were negative, but clinically significant (ie- positive bands).
I started treatment with oral antibiotic combination's in December 2007: Mepron + Zithromax; Biaxin + Metronidazole (Flagyl); Biaxin + Plaquenil, then Mepron + Zithromax again from Jan/09 to mid June/09 (had to treat babesiosis twice). I am currently off antibiotics and waiting for blood test results (checking out liver enzymes, etc.) but will be on Ketek 400 mg twice daily soon (along with Plaquenil 200 mg twice daily as a cyst-buster). Plaquenil has also greatly helped my osteoarthritis.
The fevers have been very stubborn to treat, but for quite a few months of 2009, my temperature readings have been NORMAL, or just below normal!! When I do get low-grade fevers occasionally now, the readings are far lower than they were (up to 100.9). They normally only go up to about
99.3. The main culprit has most likely been babesiosis, with Lyme disease contributing. I do not have an auto-immune disease.
It's hard to believe that I was undiagnosed for 7+ years, but unfortunately it's not uncommon. Lyme disease is included in the differential diagnosis for both FMS and CFS. In January 2009, my health improved enough for me to return to the gym after a five year absence! I have also been able to reduce my pain medication by one half! And no more chronic high-end low-grade fevers!
I have been off antibiotics for about
two months now, and I am backsliding: headaches, visual disturbances like seeing zigzag flashing lights, hot flashes, anxiety pangs, cognitive/concentration/memory problems, low-grade fevers, nausea, pain, and disabling fatigue. I am patiently tolerating it, because I am hopeful that the ongoing antibiotic therapy will help. I went from being severely disabled and mostly housebound (more bad than good days) prior to treatment to being able to "get out and about
" regularly (more good than bad days) with long-term antibiotic treatment.
One of the reasons why my late-stage Lyme disease has been hard to treat is because I remained undiagnosed for so many years. Other factors include strain of bacteria, its virulence, personal immunity, and the list goes on. Although it is a relief to finally know what has been ailing me for so many years, Lyme disease is no picnic ~ it is a highly politicized disease, with no clear consensus on both diagnosis and treatment.
There are NO Lyme Literate Medical Doctor's in Western Canada. The one who diagnosed me has retired, yet out of the kindness of his heart, and his dedication to the sufferers of Lyme disease, he still offers free advise to both patients and doctors:
http:/www.drerniemurakami.com -- web site address and forum
The Lyme disease forum on Healing Well has been a tremendous source of knowledge and strength for me. Along with my Mom's insistence, it was also the people on this forum who encouraged me to be evaluated for Lyme disease.
Feel free to ask any questions or post your opinions. I would be happy to help out in any way I can!
Cara (Carrie is my nickname, but my given name is CARA.)
*Oral Abx Combo Tx since Jan/08*
Lyme disease - clinical dx ’08; Babesiosis (Positive IgM/IgG) '08;
GERD '05; Essential Tremor ’02; Fibromyalgia ’00; Osteoarthritis; Depression; IBS; Interstitial Cystitis
Post Edited (spaztick) : 8/23/2009 6:04:42 PM (GMT-6)