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Anyone here in Utah? Anyone with Elhers Danlos?

MAC & Bronchiectasis | Last Active: Jun 7 12:17pm | Replies (4)

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Agree with Regina!
I have EDS, broncechtisis and treatment resistant MAC. It is an incredible challenge. You're not crazy. I am a nurse and it took many years to get diagnosed and even longer to start treatment. I have been dismissed many times by practicioners.
You had the BAL done, any results yet (it takes a long time to grow)?
I found it very helpful to have PT on my ribs/sholders/neck, the inflammation is always causing subluxations. I'm in the Baltimore area. My PT is an EDS specialist, but if you can't find one, have a regular PT work on all musculoskeletal areas involved in breating. Not only will it decrease your pain, but it will improve your respiratory function.

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Replies to "Agree with Regina! I have EDS, broncechtisis and treatment resistant MAC. It is an incredible challenge...."

Oh my goodness my neck and shoulders and ribs hurt all the time! The worse though is my back and my sternum. My doctor told me yesterday that I had costochondritis. I haven’t been told that since I was like 21 but it makes sense. I was in PT for my shoulders recently, but I got a very bad staph Infection from either the hot towel they would place on my shoulders and neck or the table I was laying on. I felt it come on quick. I got scared and never went back. I have had agoraphobia since the pandemic and every time I try to be brave and do something for myself it seems to bite me in the bum. I can’t go to family gatherings anymore. I get sick. I have had very hard time getting to the doctors. Crazy thing is I keep thinking back to how I got the worst infection a dentist had ever seen. I had gone to my normal tent to get a cavity filled. It was small tiny nothing I never even noticed it didn’t bother me. Didn’t hurt me. I left to go home to San Diego. I want to the dentist in Utah when I saw my parents couple days later it started to hurt really bad. I called him and he gave me a prescription For some antibiotics and some pain medication. I had a trip later planned with my mom to go to a workshop up in Mendocino. I tough it out even though it was not getting any better and the pain was getting worse and went. While in Mendocino, the pain goes so bad the pain medication was not working at all in the middle of the night I decided to take myself to the emergency room because I could not handle it any longer. They gave me an IV of antibiotics some pain medication but I think they thought I was there because I was a drug addict unfortunately. I had to wait for my mom to wake up for her to come get me, there was nothing they could do. They weren’t a Dentist but luckily nice lady overheard everything and came out and said I know a gentleman that can help you. He often works on his days off because it was a Saturday we were able to get a hold of him to go to his office. He was able to drill into my mouth. He said in his 40 years as a dentist he had never seen an infection as bad as mine was! He wasn’t able to clear it all out so I had to go see an endodontist. I’m not kidding you the Amount of antibiotics I was on and all the different kinds and the fact that it did nothing for me worries me. To this day I wonder is this where it all began. Who knows right? I have major fears of the dentist and I need to go so badly right now.