My name is Liz and I live in Cincinnati, OH. Does anyone on this website know of a doctor familiar with CPN and the protocols near me?
Anywhere in Ohio or even Kentucky and Indiana would be close. When I tried searching through posts I read that someone had a good doctor in Cleveland, but the posting was many years old and the doctor’s name wasn’t listed. I plan to discuss CPN with my rheumatologist that is treating me for Fibromyalgia and Chronic Fatigue, but I’m wary of how receptive she will be and it would be nice to see a doctor who is familiar with the research.
After reading a lot of the material on this site and doing some more research on my own I think that there is a good chance that CPN is related to many of my health conditions. It is over the past five years I have been diagnosed with health conditions that have significantly affected my daily life including: Interstitial Cystitis, Fibromyalgia/CFS, and Sinusitis/Rhinitis; as well as both Hypothyroidism and Rosacea. During the last eight years I have also noticed several increases in my exercise-induced asthma-like symptoms (which I provide the details for in the next paragraph).
My health history before the last five years also points to the beginning of a chronic CPN infection. When I was ten years old there were four students in my class including myself that became sick with what my doctor called “walking pneumonia”. I learned from my research that there are several types of bacteria that cause this type of pneumonia and CPN is one of them. The following school year I had regular pneumonia. Shortly after that I started having exercise related breathing problems including chest tightness, not being able to catch my breath, and a bright red face, but these only during continued strenuous activity like competitive sporting events. I was told I had exercise induced asthma and given a preventative inhaler, but despite using it every soccer and basketball game I still always had to take breaks on the bench. I stopped playing sports by my junior year of high school so I did not have many exercise problems until my last year of college when I joined a ymca soccer league. At that point my exercise symptoms were much worse and I had also developed a new extreme fatigue after any sustained strenuous exercise. According to extensive testing my doctor said that I didn’t have asthma but did have mild exercise-induced bronchospasm. She prescribed several inhalers but none worked well and I eventually quit the team. My doctor said both the fatigue and the perceived worsening of my asthma symptoms were due to being out of shape, but I had doubts about this. While I was not in athlete shape I did exercise regularly at least five days a week including 45 minute fast walks or hour long low impact aerobic tapes. Unfortunately as time went on both problems got worse and occurred with less and less exertion. About a year and a half ago these newer symptoms were diagnosed as part of my Fibromyalgia/CFS. During that time period I had a great deal of testing to figure out what causing my exercise related and other new symptoms. The allergy/asthma doctor I was seeing said that being told I had bronchospasm but not asthma made no sense because it’s a form of asthma. He ordered tests that showed no sign of asthma or bronchospasm. My doctor explored other allergy related causes for my exercise symptoms but didn’t find anything.
I apologize for going on and on about the excercise asthma history but I have been so frustrated for so long on this topic and I didn't even include everything thats been involved. For along time I have thought that my two experiences with pneumonia, particularly the walking type right before could not be coincidental. It was exciting to read a story of someone with CPN had a similar experience and that same person also suffered from chronic sinus infections. Since I was in high school I always get at least two sinus infections every year, some years I have had repeat infections all winter long. It is only within the last two years that I have developed chronic sinusitis/rhinitis. It seems like the more I read on the site the more possible connections I have to CPN.
It has now been five years long years that I have been dealing with chronic health issues that interfere with my life and has been 17 years since I first started having the asthma like symptoms that no doctor can determine the cause of. I think for the first time in forever that I have real hope that maybe I can get better and not just temporariliy treat the symptoms or devise methods to accommodate my health limitations which is what I have been doing with my current doctors.
I would greatly appreciate any suggestions or comments on my situation.