Recent content by Alorance9571

Thank you so much for your reply. It’s exactly what I needed to hear as I was losing hope. I also got c diff from the hospital and they wouldn’t extend my short term so I’ve been trying to work with c diff on Flagyl, and my docs just don’t seem to care. I’m on day 16 of Flagyl with 5 more...

Yes, I love my physical therapist. Unfortunately I’m now battling c diff so gotta get that cleared up first. Magnesium is helping quite a bit too.

After culturing pseudomonas for the first time, I was put on a few oral antibiotics for a month, then my o2 sat went to 89 so they put me in the hospital on 2 more weeks of iv doxy, tobi and one other. Been on probiotics the whole time. I’ve heard it’s normal to lose your appetite and have...

Yeah my knees to my heels are still killing me. And the doc just shrugs his shoulders like he has no idea what the cause could be.

Thanks Kenna, That’s what I was thinking. My physical therapist is wonderful. I start Cayston next week so as long as my reaction to that isn’t as awful as tobi I’ll go see him.

So I’ve finished Cipro for my first pseudomonas Infection and am left with Tendinitis in my knees. This started when I first started taking the Cipro but doc said the risk was worth it and I’m okay with that. Just curious for those who’ve had it, does it go away? I’ve been lucky enough for...

Thanks y’all. The achiness went away but started back up again, worse. And the side effects of the tobi are terrible. Going to post another thread on that one..,

Hi all, I’ve just cultured pseudomonas for the first time. Can this bacteria cause flu like achiness? I’ve been dealing with some neurological issues as well and diagnosis has been difficult. I’m currently awaiting new patient approval from a wonderful neurologist who specializes in “zebra...

Thank you for your replies! It has been extremely frustrating dealing with the doc's. I've been going from doc to doc for 35 years, and luckily a surgeon I was seeing for my abscesses a couple of months ago mentioned CF, and suggested the genetic testing. I'll call the CF center on Monday and...

Not at a CF clinic yet...I'm waiting on my infectious disease doctor to give me a recommendation. His nurse called me with a recommendation for a pulm at a hospital that has a CF clinic (at UT Southwestern), but said that the doc would rather have me go to National Jewish. I asked her to get...

I had a gene sequencing test done, and it came back as follows: Finding: Presumed Positive They found two disease causing mutations, G542x (now called 1624G). The other, is 3120G (now called 2988G) Both are heterozygous, but the testing couldn’t tell if they were on different chromosome...