DR. BAYO RESPONDS

I have a mystery illness, and I need your help finding out what it is. I just feel it in my soul, something is wrong, and we are just not catching it. And I need help because maybe somebody out there can give me some advice on, what to ask for, what else I could be tested for. I've literally been sick for a solid nine months. My symptoms have been fevers, night sweats, chills, body aches, respiratory, up brown phlegm, vomiting, loss of appetite. Extremely tired, like fatigue is unreal, and I have had diarrhea the last eight months. I've seen my cardiologist, pulmonary doctors, infectious disease, hematology, rheumatology. My lab work looks good except my CRP is continuously up. I mean over 115. A month ago, it was at 191. I have been started me on IV antibiotics, Zosyn, vancomycin, doxycycline, and now they've just been treating me with Z-Paks. When I get the antibiotics, my CRP comes down. I feel normal. But as soon as the antibiotic starts wearing off, my CRP goes back up, and all of my symptoms return. They did do chest X-rays, MRI, CT scan, and two PET scans. It was showing, like, some ground glass opacities. I don't know if I'm saying this stuff right. I had a bone marrow biopsy done, and I also had a lymph node biopsy done. Every test is coming back normal, but we can see things on the X-ray and in the PET scan. I do have congenital heart disease, that's not what's causing all of this. They have literally, like, tested me for everything, it hasn't gone away. If anything, it's getting worse. I do have really good doctors, and I do feel very confident in their care, but I just feel like maybe somebody out there might know something that they haven't checked me for yet. Nine months without getting any answers is incredibly frustrating. I immediately thought of four things that might help. I'm Dr. Bayo. I'm a board-certified family medicine physician and health advocate. After watching your video, the first thing I thought of is it's possible this is a chronic or atypical infection such as Mycobacterium avian complex, also known as MAC. This can cause a similar pattern to what you described in your video, and it's often missed on standard testing. Second, valley fever, also known as coccidioidomycosis. This is a fungal infection that is commonly missed and can cause fever, chills, body aches, weight loss, and ground glass opacities. Third, sarcoidosis. This also causes ground glass opacities and is associated with an elevated CRP. Here are two things to consider at your next doctor's appointment. "I've noticed my symptoms improve every time I'm on antibiotics and my CRP goes down. What are the next steps to rule in or rule out other conditions that are similar to this pattern?" And second, if you haven't created a medical binder yet, please consider making one. It can help identify patterns that you may not have noticed. Every time you get a lab result, every doctor's appointment should *and details about symptoms* go into that binder, and it can be very helpful for you and your doctor *and details about symptoms* to use as you go along this journey. My hope is that you get answers as soon as possible, and thank you so much for sharing your story.