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I tried gentamicin in my sinus rinse. Prescribed a vial that I used a syringe to take out the amount and add to my rinse. I did not continue since it was not effective. I had better luck with nebulized antibiotics - breathing through my nose as well. I have read where people get their...

Hi, Sorry for posting late. If you have not had success getting a full genetic panel done, you can request to meet with a genetic counselor. I had a negative sweat test as a child, and came up negative on 3 basic panel tests (kept running it since they were sure I had it). Since I never...

There is a PCD Foundation website. They had a forum at one time, but now have a closed facebook group you can join. I would encourage you to contact one of the consortium clinics (PCD clinics) to discuss the information you have at this time. I have 2 recessive genes and my organs are on the...

Just saw this article and thought of you. My issues did not start until I was 4, but this experience started at birth and sounds similar. I know it was very hard for my parents not to be able to find answers, so wishing you success for early treatment...

Hi, I have PCD that was diagnosed a few years ago at 49. Not sure what genetic testing was done, but thought I would mention my nasal biopsy done 20 years ago came back structurally normal even though I had it. Pneumonia, ear infections, and sinusitis was very common for me in childhood and I...

Hi, I was diagnosed with PCD at 49 (2 recessive genes). My health issues did not begin until around age 4 and obviously the treatments were lacking. Just thought I would mention that I can not tolerate albuterol and other inhaled therapies because of SOB. I have had better success with...

My thoughts are with you Little Lab. I have always found your logical explanations and genetic information an incredible resource. I can only imagine the enormity of this leap of faith! You are a teacher for so many of us even during pain and feelings of indecisiveness. Stay strong. Your...

I am 51, diagnosed with PCD and a lung function of around 40%. A few thoughts that may help as I also have a hard time using inhalation medicine. Been through the allegra, singular cycle. I do think allergies are a component and I currently take vitamin D, probiotic, and avoid dairy, along...

Sometimes hormones can play a part in inflammation. I certainly had times in my cycle that I was more SOB. Thought I would mention it, since perimenopause is the worst. I am 51 and now I am starting to gain weight...not sure if I like that!

My lung function is about 40% (33-42 over the past 8 years) and I have Pseudomonas that is still sensitive to a few antibiotics. I would suggest checking out essential oils. There is a thread on this subject and there have been studies that show some of these oils are more effective than...

Best of luck in the hospital. Hope they figure out where in the lungs the blood is coming from and provide a solution. I use to have considerable hemoptysis before an embolization about 8 years ago. Doctors always say it seems like a lot of blood, but there is mucus too. No...you pretty much...

I believe it is the same info but the consortium is listed on the CFF site: https://www.cff.org/Research/Researcher-Resources/Research-Consortia/Mucociliary-Clearance-Consortium/

No insight but will suggest that the consortium on mucociliary disorders may be able to offer some. Participating clinics have contact information and in my experience were very helpful. https://www.rarediseasesnetwork.org/cms/GDMCC I have had respiratory disease since childhood and it wasn't...

Check into PCD - Primary Cilia Dyskinesia. There is a consortium headed up by UNC - University of North Carolina Chapel Hill that is doing genetic mapping and studies on respiratory diseases. You can contact the study coordinator with all your DNA info and they will let you know if your child...

Hi, I was able to get my sinus issues under control by adding xylitol to my sinus rinses. I originally tried adding TOBI or gentamycin to the rinses, but the xylitol ended up working better. I do not have polyps and have had only one surgery 17 years ago, and I culture pseudomonas in both my...

Yes...if your insurance allows you to go to a CF doctor and you can get a relatively quick appointment that would be ideal. If not, a good pulmonologist will order standard tests to try and put the pieces together. Basic CF blood panel, Alpha-1, IGE if allergies are involved, and a MUST, a...

Sorry it is taking so long to get answers. When I did my genetic testing that included PCD. CFTR, and other genes it took 2 months for the results. I think the basic PCD panel may be more like the common CF test, which has quick results. When I was young, my mom used CPT (chest physical...

Hi, I was just recently diagnosed with PCD at age 49. At age 7, I was in and out of the hospital with multiple bouts of pneumonia and had a negative (CF) sweat test. I was diagnosed with bronchiectasis as a result of an immune deficiency. Interestingly, it did seem like I outgrew some of the...

Hi, I recently was diagnosed with PCD (primary cilia dyskinesia) by genetic testing. It is unfortunate that a nasal oxide test is not available to give you a quick result. I only had a genetic test for the common CF mutations and did not come up with one...they checked 3 times since my lungs...

I had 2 bronchoscopes as a child and they did not see cilia issues. About 17 years ago, I had my sinus cilia tested after sinus surgery. Came back normal. You can have normal cilia structure that will not work in the proper motion. My understanding is that PCD is just now being mapped...