Hi Renee…
It was great to hear from you! Thanks for listing the supplements..very helpful!
I had gone to National Jewish Health a few weeks ago. Got a complete work up test-wise. I thought the experience there would quell all my questions and fears, but it did not. Although I did get some help, it fell short in in forming me where my disease REALLY STANDS. I HATE TO SAY THIS ABOUT THEM, but it’s the truth. Sooo, I decided to go to Dr Swenson, who is a Mac/ Bronk specialist in Atlanta…an hour and a half from me. He’s really got a fabulous reputation! Totally specializes. Mac. Bronchiestasis!
The visit was fruitful on many levels. I loved him. He’s smart, dedicated and EXPLAINS THE TRUTH. IN DETAIL.
I HAVE BEEN GETTING A LOT OF RIB PAIN NOT JUST IN FRONT, BUT ON THE SIDES. I assumed it’s my costochondritis…..only worse than I ever have had in 40 years. Also fibromyalgia too…..same scenario. Long story short…..
He said he was concerned about the Mac. That the Bronk was kinda mild, but the Max is kinda extensive and he attributes my recent extra pain and shortness of breath to extreme inflammation from this Mac.
He said that fortunately, it shows no cavities ( yet), no bleeding, no coughing up blood, which can be expected if the disease, in my case goes untreated down the line.
His recommendation is that I start off, VERY SLOW AND CONSERVATIVELY on Azithroymin and the second med…I’ll look up the name. Firstly, it would be three times a week, not every day day. I would have an Opthomologist examine my eyes every three months.. the first exam would be a baseline line visit. Then he will have something to compare with in future visits. I explained to him how I react to meds.. he really gets it.
He said he will be there for me me. EVERY STEP OF THE WAY. if I can’t tolerate them we will discuss and come up with solutions. He said ‘I’m going to watch you very carefully’.
If I do not do this my disease will most likely progress and then I will be in a position where I will HAVE TO TAKE THE HARSH MED ALSO, THE THIRD ONE.
After listening to him, and in my particular case, I MUST DO THIS or I could become a very sick girl. Progression.
He has many many patients using the the two…….he said. I heard from a friend that he is actually conducting a clinical trial with the two for people in my stage.
So I am getting meds…slowly and small doses and with a lot of supervision from Dr Swenson. I’m very scared and have to adjust now.
I’ll let you know my progress. Keep in touch. Bon
Thank you so much for the information. I would like to know the name of the drug you are taking with Azithromycin. I take 500 mg three times a week and the pain in my side is much better. Maybe the ID doctor has ideas too. I will keep in touch with you. If 2 work why take 3. Please let me know what 2 is and if you notice a difference in your eyes.