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4 days ago · Have to start the big three in MAC & Bronchiectasis

@pinktower , My gosh, it sounds like you have really been through it! I hope you are feeling better from your Crohn’s episode. I know that was no fun. About starting on your meds; I have heard that some doctors have recommended that you introduce each antibiotic a week apart. That way, if you have a bad reaction to one, it will be easier to pinpoint which one it is. Members have written that Rifampin was hard on their stomachs, it worked out best for some if they took it on an empty stomach. It has been known to cramp the stomach or cause nausea. Everybody is different, you may not have any trouble at all with it. Let us know how you do on the BIG 3.

4 days ago · Video Q&A about Vascular Malformations and Related Syndromes in About Kids & Teens

@kanaazpereira , Hi Kanaaz! I missed the broadcast. I will see if I can still see it.

4 days ago · Have to start the big three in MAC & Bronchiectasis

@jkiemen , Jo Ann, you have probably already read that the meds can be rough when you first start taking them, but get easier after the second week. Do let your doctor know about the ringing in your ears. Do you know which of the three is causing it?

4 days ago · Question regarding symptoms in MAC & Bronchiectasis

@jenblalock Hi Jen. The prednisone should help a lot. I get put on it at least one time a year. I love the stuff. It makes me feel strong and gets my lungs back on track. I hope it will work as well for you.

6 days ago · Autoimmune Diseases and Fatigue in Autoimmune Diseases

@johnwburns , Hi there. My daughter, who is 30 yrs old, has zero energy, and was born that way. It has been sad to see her not join in things or do physical outdoor things. She simply does not have the energy. She has severe Raynaud’s Syndrome, which is an autoimmune disease and it is probably secondary to other underlying syndromes like Scleroderma. I have often wondered about a mitochondrial disorder as well. She lives on Adderall, which is counter-productive for the Raynaud’s, but she cannot function without it. I have tried to get her to seek medical attention and further testing; but she never gets around to it.I worry constantly about her. Any input for me?

6 days ago · Video Q&A about Vascular Malformations and Related Syndromes in About Kids & Teens

Hi. My daughter developed a hemangioma a week after birth on her forehead. It went away by kindergarten. She is now 30 years old and has an extreme case of Raynaud’s that encompasses her entire body. On a daily basis it looks like someone has poured scalding water on her. It started out with affecting her fingers and toes at age 13. Then moved to her knees and chest. Now it is her entire body. Is there anything that can be done?

6 days ago · Question regarding symptoms in MAC & Bronchiectasis

@pfists , Shari, have you gone for a bronchiscopy wash yet? I always pray for you and @tutti, Lisa in your fight against abscessus.

6 days ago · Question regarding symptoms in MAC & Bronchiectasis

@pfists, Shari, same here on not tolerating fragrances. It was funny, when I first starting my husband, I would cough violently whenever we got close to one another. He used to joke that I was allergic to him. We figured it out that it was his Tide laundry detergent, Downey softener, and his strong men’s deoderant. We got rid of all of those and eliminated the problem.