Help - Angioedema Reaction to Antiobiotics - may need to go to ER for antiobiotic IV

[Jennifer J]

Thank you Gingergrrl! I've been thinking of you and your treatment this past week. That is so sweet of you what you said about me. I think the same of you and so many others also about how brave and courageous you each are (and many other qualities too that I can't easily put into words right now).

Life can be so hard especially with this disease (and other conditions and things we face), we all are doing the best that we can in each moment with where we are at and what we have to work with. Thank you and everyone for your generosity in sharing on PR (and the internet), and every other way you contribute, and always our heart is with everyone that can't.

Thank you Ginger for writing back and encouraging me to see a doctor again. I needed to hear that to put things in check for me with what is going on. I physically couldn't pull it off. Going to the ER or doctor, is a gamble with ability, set backs, and daily (and future) survival.

This has been a roller coaster ride. Each time I think it's getting better something new pops up with it on my face by or on the infection or how my body is reacting. These dang chills (and sometimes warmth) keeps coming for days and going. I really think it has to do with the weather changes, PEM, and not eating as I should. I'm going to have to pay attention in the future when I have chills that aren't during a period of a skin infection.

Finally saw a dermatologist yesterday. He's very much confused me with what he said about it. Contradictory to what several other doctors have said this year and last year.

I don't know if he isn't that familiar with it and it being treated with mupirocin. His practice has moved into comestic procedures over the last several years, so possibly he doesn't deal much with this, if ever?

I felt that he had one foot out the door the moment he walked in. I saw him last year for another kind of infection and needed to run a bunch of questions by him regarding my concerns about how he wanted to treat it and how those treatments affect me. I couldn't even talk that day and did a horrible job. Without him understanding the complications we face with ME/CFS and with the littlest bit of medicine and my inability to talk (I struggled to read it off my paper), I could see where he could think something is up with me mentally. So maybe he didn't want to put any time into dealing with why I was there yesterday.

It's hard to know who to believe or know are there pieces of missing information that each didn't share that I need to know more thoroughly so I can understand who to believe or that both are right. It's back to wait and see, internet research and possibly finding another dermatologist to see. It does look better today, yet I've said that many times through out these 2 weeks to have it change later that day. I'm rooting for it's getting better.

Thank you for your offer to share information about Ketotefin. I have an appointment with a allergist specialist in two weeks, we'll see if he has me go that route or if I'll try it on my own. I'm sure I'll have questions then.

Regarding angioedema it was not part of the infection. It can be part of anything I may take for the infection. The infection took up most of my left cheek but it didn't exacerbate my angioedema that I live with daily.

Hope this wasn't too much information. Sometimes I write on cause it helps to clear my head and sometimes helps me to see something I'm missing. Also I know when I read something someone here writes about what they are going through it helps to read it either to know or because I can relate, and it's good to hear everyone's ideas that may help me or help someone else.

Hopefully, hopefully this infection is on its way out and I can use my ability on other things. Thank you everyone for caring and for your support. It's so nice and helps a lot. I'm thinking of you too and all you go through.

 

[Gingergrrl]

Finally saw a dermatologist yesterday. He's very much confused me with what he said about it. Contradictory to what several other doctors have said this year and last year.

What was his final verdict re: the infection and what you should do... (or did he not have one)?

Thank you for your offer to share information about Ketotefin. I have an appointment with a allergist specialist in two weeks, we'll see if he has me go that route or if I'll try it on my own. I'm sure I'll have questions then.

Keep me posted re: the allergy specialist and am happy to share info on Ketotefin or whatever is suggested for you.

Regarding angioedema it was not part of the infection. It can be part of anything I may take for the infection. The infection took up most of my left cheek but it didn't exacerbate my angioedema that I live with daily.

That makes total sense, thanks for clarifying.

Hope this wasn't too much information.

Not at all and I was worried about you and had hoped you'd post an update when you felt well enough. I'm hoping the infection will be totally gone soon w/just the Mupricon cream.