Fibrosing mediastinitis

Hi. I have this disease. Excellent researchers at Vanderbilt believe one explanation for the disease is a body’s uniquely poor reaction to histoplasmosis, which is very common. For us, the body’s immune response kicks in and doesn’t shut off. I’ve had multiple lung stents to address the effects of the fibrosing. Hope this helps.

@juy77- Welcome to Mayo Clinic Connect. I am the mentor for the Lung Health Group. Although I have never had a lung infarction I do understand that it is very painful. I have experienced a lot of pain from 2 lobe resections. It is my understanding, from what you have said that you were diagnosed with Fibrosing mediastinitis in October. Have your doctors discussed why you had an infarction?

@jdjj- I would also like to welcome you back to Mayo Clinic Connect. I see that this is your first post to this group. I am wondering how you found the research at Vanderbilt. How long have you had this?

Will you share some of your tips and methods that you use to help keep yourself comfortable?

Hi. How long? I received the diagnosis two years ago, but it appears I've been living this encroaching fibrosing for a decade or longer though was only now feeling the effects. I live in the Nashville area and was fortunate -- to say the least -- to have a pulmonologist who trained under a Vanderbilt researcher (recently retired) who had been studying this disease for many years. He referred me to this doctor, one of his mentors, who was able to confirm the diagnosis, which led to the stenting.

Thank you, no one is really sure why the infarction happened, perhaps the pressure built up on one side of the artery that is being crushed and blew through is the thought.
No one seems to have an idea as to how long this has been growing, I had been having what I thought was rib pain for at least a year and half, also a cough for 6 months which I thought was allergies. I am usually fatigued and run low grade fevers with the Lyme Disease and Babesia anyway so never felt anything else was going on. I also have MTHFR, and wonder about the Genetic immune system connection.

@jdjj thank you for chatting with me, it helps to know there are others. I get massage, use the Infrared Sauna, Chiropractic, get out every morning for a walk, hoping to oxygenate my blood. Dr Peikert seemed to think that is a good idea as well.

Has anyone heard of Peptide Therapy for over reactive immune system? The effect it has on the th1 and th2 cells sounds good. I am getting Vitamin C IV and Ozone uv next week for overall immune system boost as well as for the Lyme Disease. I plan on checking on the Peptide, and also Alpha Lipoic as well. I will keep you posted.

Hi @juy77 I’m not familiar with peptide therapy. Are you referring to therapeutic peptide vaccines for treatment of autoimmune diseases? What have you learned about peptide therapy?

Hi, no not vaccines. I am still reading and looking into the Peptide Therapy. When I have better information I will post.

Hey. Do you mind sending the Dr. you went to. My husband was diagnosed 7 years ago at Vanderbilt and saw Dr. Loyd. He's been having complications recently and we don't know who he should since since his doctor retired.

Hello and welcome to Mayo Connect. We are a community of patients and caregivers who try to help one another. We are not medical professionals so cannot provide medical advice, but can share our experiences
My very first call would be to Vanderbilt to see who has taken his patients. That is what I did last year when my favorite hand surgeon moved away, and the staff found me a great replacement.
Have you tried that?
Sue