Burkholderia cepacia help, PLEASE

[believingjesus]

My friend has been in the hospital for the last month and they have tried synergistic medicines through iv first and then the last couple weeks they tried fosfomycin through iv.

I edited this post because cepacia is just like any other thing a person with cf gets in their lungs - You fight it with everything there is and you don't quit. My friend will be fine.

 

[Ratatosk]

Hopefully you'll get a response. As with most bugs, people react in different ways. There are some who've cultured it for years with no little or no symptoms, others have a very difficult time. Here's a link to the CFF on cepacia. Not sure the date on it.

https://www.cff.org/Living-with-CF/.../What-Are-Germs/Burkholderia-Cepacia-Complex/

 

[kenna2]

As far as I know about bio-film drug, there isn't any on the market at this point. If there were, I think all CF patients would be taking them because it would help get rid of so many chronic infections we have. I do know from the research sites and cystic fibrosis foundation site that there are a couple of these drugs currently in different phases of clinical testing. So that is encouraging! Best of luck!

 

[kenna2]

I guess mine didn't post from this morning...As far as I know drug wise for meds against bio-films there isn't anything on the market. I do know that from the CF research site and CF foundation site that there are a couple of studies going on for the development of meds to break down the bio-films. I think one might be in the clinical trial stage. So that's good news! While I'm not familiar with burkholderia cepacia, I would highly suggest visiting an infectious disease doctor for a second opinion. Luckily for me my CF doctor and infectious disease doctor ( i culture aspergillious from time to time) went to school together and communicate and if my meds for my CF aren't doing what they should, my infectious disease doctor knows of some other things to try and have worked with success.

Don't give up hope, we are all fighting this together.

 

[MissAlexsBP]

Hi @believingjesus! My understanding is that everyone's body handles cepacia differently and each strain of cepacia affects people differently. I have cultured Multivorans strain of cepacia for several years now and have luckily not seen a huge difference in my health. I am not on any specific medication to treat the cepacia, but my pulmonologist keeps a close eye on me and my cultures. I am fortunate to have PFTs ranging from low 60's to mid 70's generally. Wishing you and your friend the best and sending you happy thoughts! Please feel free to reach out to me if you have any specific questions!

 

[believingjesus]

Thank you Kenna2 and MissAlexs! I just saw your posts, idk why they didn't show up before now?? I was on this site yesterday and they were not on here??? But I did get your pm MissAlexs. I appreciate both of your responses. We are not giving up hope and have so much to be thankful for already. I did contact Dr. LiPuma and he offered two antibiotic combos that had not been tried yet but were given only as suggestions because he doesn't know what my friend is sensitive to. I gave those suggestions to my friend to share with the doctors in case they want to try iv antibiotics again. My friend is still in the hospital but they are coming up with a treatment plan next but Orkambi has stabilized my friend so far. My friend started Orkambi just this last week and it is already brought down his very high heart rate and thinned the mucus. You would be so inspired by him. He always finds the positive in everything and is thankful every day for his life and accepts where he is in life at the moment whether it is really good or even if it is not the best and he finds things in that day to be thankful for and truly lives. He has so very much to be thankful for in his life and he knows it and is thankful. For future reference in case anyone is looking up anything to help their loved one with one day Dr. Lipumas suggestions were: ceftazidime - avibactam; and the other combo was: ceftolozane - Tazobactam. My God is enough and I believe He is helping and will continue to do so. Thank you Kenna2 and MissAlexs for your support and encouragement! It is so appreciated.

 

[believingjesus]

Kenna2 I am positive that your message on September 22 did not show up until today or I wouldn't have posted that nobody responded but Ratatosk!! I don't understand why it didn't show up?? I appreciate your encouragement. I don't understand why it just appeared today on September 25th and not the 22nd? Idk if something is wrong with my phone? I'd really like to know cuz my phone has been acting up anyways. Thank you for thinking of my friend.

 

[stephen]

I have recently noticed that posts appearing on my PC when I'm signed in have not shown up on my iPhone when I'm not signed in.

 

[believingjesus]

Oh wow, thanks Stephen!!

 

[kenna2]

Yeah, I kept checking to see if it posted on my computer where I posted it from and it never appeared. I was really confused but I wanted to make sure you got my message...lol.

 

[believingjesus]

Lol! That's funny cuz I see you posted this at 2:30 pm and I'm just seeing it now!! I guess we know now it's a phone thing. Thank you for caring about my friend. You would love him, he's an awesome person. I wish I could take this struggle away.

geez I thought I wouldn't have to edit but my time on this site must be a different time than where I live. Oh well. So I guess you posted yours not too long before I responded. You all probably think I'm a dunce, and that could be true....?

 

[Ratatosk]

I would remind everyone to be patient with this site as everyone is working hard to get the forums back on track and moving recent posts from the other site to this one. Not everyone has heard about the move, not everyone has learned to navigate the old (now new) site. We're all in this together. As for the topic... Not everyone has experience with cepacia.