I've written about my sister before. She asked to be tested for CPn at Cleveland clinic and came back positive, something like 1/125 or close to that. Cleveland Clinic asked her if she wanted to be treated with 1 abx for a few weeks.
She has lung and sinus problems, fibromyalgia, fatigue and serious heart and vein problems and inflammation. Basically the falling apart syndrome. I tried to get her started on CAP, but she didn't follow through, claiming she didn't have time to get sick. She did take NAC for awhile. Now she is really sick, with pretty bad heart problems. She has been diagnosed with everything under the sun over the years, but then they always end up changing their minds and saying it probably isn't what they thought it was.
Fortunately, she ended up with a temporary doc who graduated from Vanderbilt, and knows Dr. Stratton, and is familiar with CPn but does not know the details. He finally said that he thinks she probably has an autoimune disease caused by one of 5 infections.
He is NOT sure she has CPn because of her 2nd negative test and her not reacting to NAC. He said that he thinks she might have it, but also could have any of the other diseases that could be causing this inflammation. He thinks that an infectious disease doc should explore ALL 5 of the diseases to treat the correct ones.
I figured she has CPn, but she tested negative this time for CPn with an antibody test. (After the positive about 1/2 year (or longer) before). She also had taken NAC for a long time, 4 pills a day, and had no response.
The question (and confusion for her doc) is, why would she have antibodies on the first test, and not on the next test? Is this common? Why would she not respond to NAC? Is her immune system down so no antibodies, even though she may have CPn? Or does she not have it now?
The other problem, according to this doc, is that ALL 5 of these infections are nearly impossible to find in the body. He did tell her to make an appointment with a new infectious disease doc in town, whom she can't see until Nov 1, who might be able to work with Stratton. But he kind of made her afraid that maybe she cannot ever get well, because if they cannot find the disease, they won't know what to treat for, and they won't treat her. Is it that impossible to find the diseases? Does it really matter? Perhaps a knowledgeable doc can treat for different suspected things and guage the results to know what to do?
Another problem is that she has a bad heart now. They had to implant a pacemaker, but that is not the solution or really the exact problem. She feels lousy for lots of reasons. If she starts treating for CPn, will she survive the heart damage of heat shock protein with steroids? Should she go slower due to her delicate condition, or faster, due to the dangerous affects of heat shock protein to the heart?
She thinks she needs to let her body recover from the surgery and from feeling lousy to start any treatment. The doc agrees. She is supposed to start supplements and NAC again.
These are the puzzles going through my mind. Unless she gets a very good and knowledgeable doc, she needs to figure out some of this stuff herself to know what to do. So I'm posting this in case anyone can give any answers or suggestions. I realize that some of these questions (below) are probably requiring a good doc to answer, but if anyone knows any answers or has any idea about any of them, it would help my sister a lot. Some of you guys probably have as good an understanding as anyone with your backgrounds and treatment experiences.
So, does anyone know why an antibody test for CPn would CHANGE to negative? Does anyone know why she wouldn't react to NAC, when I, as her younger sister reacted strongly? Is she doomed because no one knows how to find these diseases, so they won't know what to treat? (I know this is partly true, but probably not a road block with a good doc). Should she start treating CPn first, since she had one positive test, even if she's not sure she has it and she might have other infections? OR should she wait until the doc knows what she has? Can she even do it with a bad heart, considering the heat shock protein problem? She is about 62 years old.