Hi Lo,
Thanks for sharing some of your medical experience with me. I'm so sorry you've struggled and been in the dark for so long. It's frustrating, to say the least, that we often have to be our own researchers, diagnosticians and treaters, because there is so little info out there in the general medical arena. I'm glad you finally found this resource to help guide you on your way and give you some support. I hope you have good luck with Dr. Levine.
I am interested in Dr. Natelson's research projects that you mentioned. I looked it up and I think I will apply to be a part of one of the studies as well. If I get in, perhaps I'll see you there!
Yeah, I'm not gung ho on seeing Dr. Podell right now. I can't put my finger on it, but his website along with my previous experience with him doesn't get me too excited. Not to mention that the initial visit costs $1100. My brother is not ill, he had a professional relationship with him.
Thanks for your suggestion of Dr. Goldstein. I actually saw him when I was living in CA, and unfortunately, he was unable to help me. Of course, that was a long time ago, and I'm sure he's got newer things going on now. I'm hoping if I get into Natelson's study that I will get some more neurological info from the study tests.
Thanks also for your suggestion of Dr. Mirza. However, I wasn't able to find much info on him aside from one guy in these forums who seems to be a big fan. What I did read about his approach looks like stuff I dealt with already, and I don't like the idea that he doesn't believe that CFS really exists. He doesn't sound like he'd be a very supportive physician if one of his ideas didn't work out. I suppose he might be helpful for someone who is just starting to explore what is going on with them, so certain things could be ruled out first.
I took the liberty of going back and reading some of your earlier posts, and I read about your difficulty with a tightness in your chest and problems with breathing. I have been struggling with breathing since the early days of my illness, though not nearly to the severity that you have. My tightness is not in my chest, but in my diaphragm and solar plexus, which also affects my digestive system. It takes much effort to inhale deeply. I wanted to share with you a website and some info re: breathing that might be helpful to you, if you're not already aware of it. According to Dr. Myhill, she believes that PWCs breathe TOO much, rather than not enough. In other words, she thinks we hyperventilate. She recommends a technique called the Buteyko method. I have been working with that method a bit myself, and thought it might be worthwhile for you to check out. The best site I found for it is http://www.normalbreathing.com/
Here is a link to the article by Dr. Myhill.
I hope this is helpful to you. Take care, Diane[/quote
After leaving work due to severe CFS, I was also diagnosed with chronic hyperventilation syndrome (by another doc), which explains why I get out of breath all the time. I've worked on breath retraining and have had some success with my hyperventilation, but I guess I need to try the Buteyko method!!
I think my hyperventilation issues stem from ineffectively dealing with long-term (lifetime) chronic stress & anxiety. I believe my body was eventually in a constant state of fight or flight which lead to hyperventilation syndrome due to physiologic changes (ANS) that I think lead to a weakened immune system & eventually CFS.
I believe there is also a genetic component that I couldn't change, but I believe that if I'd learned stress managment techniques early on, I may not have gotten as sick as I did.