Hi and thanks for reading my first ever posting on a website. (and apologies for the length)
I've had problems with my health ever since the summer of '94 when I had mono. After that summer, my stamina never returned. After years of weakness, fatigue, exercise intolerance and rebounding and "getting sick all the time" I was diagnosed with CFIDS. (all to familiar, right?)
Before my mono diagnosis, I was given antibiotics to help avoid any secondary infections. Unfortunately, I ended up with a terrible yeast infection. I suspected that it had become a systemic candida infection. Over the years I've asked many doctors about this and was either written off or at best, politely listened to.
My condition was worsening over the years and pain was also becoming enough of a part of my life that I'm sure a fibro diagnosis was to follow. I was lucky enough to find a nurse who did some great allergy testing (SET) and helped me to identify some foods that amplified my inflammation pain. Avoiding those foods reduced my pain significantly.
This nurse also was familiar with systemic yeast infections and, despite having had negative blood tests for candida with previous practitioners, she suggested treating with Nystatin since I had nearly all the symptoms for candida and testing often didn't give accurate results. This changed my life! The symptoms from the yeast die off grew terribly stronger over the course of a week and I suspected we were finally on the right path. At that point, I didn't want to keep feeling that way and did a bowel prep to clean out all the die off. After that, I felt GOOD for the first time in years. I even felt like exercising!
I've been working to rebuild my immune system and have returned to a quality of life that I had previously given up as being a possibility. But I'm still not where I'd like to be.
My thyroid tests come back "normal" and I supplement with iodine to keep it so. (previous goiter w/nodes - nodes gone and goiter shrinking w/addition of iodine)
I also have dysautonomia. That predated CFIDS, having been present since childhood.
The nurse I worked with is no longer available. I'm hoping someone knows of a doctor familiar with treating infections. I have long wondered about a mycoplasm or other infection, but can find no one willing to consider these as anything more than the latest Dx craze. I'm looking for someone with experience treating CFIDS comprehensively, including testing for and treating underlying infections that may be contributing to the problem.
I've read somewhere that insomnia is often associated with microbes. Has anyone found this to be the case? I've wondered if it is another myth promoted through the internet.
I've seen a variety of doctors and have yet to find someone with the experience I'm looking for. I'm in mid-Michigan. I'm hoping someone out there has had luck with a doctor. (And if they accepted BCBS-PPO insurance that would be GREAT too!) Please let me know of anyone in Michigan or neighboring (Indiana/Ohio) states. I'm hoping to not have to go to California, though some have recommended specialists there, suspecting Lyme disease. Also, I'll be at Cleveland Clinic for testing regarding my dysautonomia, so if there's someone in that direction, I could consider that as well.
I'm not sure what (if any) additional information would be helpful. So, as this is already a rather lengthy post, I'll just say thank you again. I look forward to any replies.
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