I've about had it with my "asthma-like" illness which has just steadily limited my activities for almost a year now. The previous three years were not so bad - but this year is ridiculous.
I started a long term antibiotic regimen - but I don't think it is helping. The cycle is as follows: 1. Get sick 2. Try to tough it out 3. Give up and go on a 16 day pred taper. 4. Feel a little better for the last 5 days of the taper. 5. Feel almost normal for a week after stopping. 6. Start getting worse again the second week after stopping. 7. Rinse and repeat.
I am on step 2 yet again. Will need pred again in a few days. This cycle has been going on uninterrupted since September. Sick of it.
I know many of you go to the Cleveland Clinic. It is a 6 hour drive from us - but our daughter lives only about an hour away from the clinic. So....I could easily stay with her.
Remember - I do NOT have Wegeners', so I would need a doctor(s) who is very good with each of my diagnoses which I know often go along with Wegeners: asthma, chronic bronchitis, bronchectasis and chronic non-allergic rhino-sinusitis. I do have slightly lowered immune levels - especially the IgG 2 subclass. So, I am interested in the following:
1. A good ENT and/or
2. A good immunologist who deals with BOOSTING the immune system which would probably be the opposite of what a weggie needs. And/or
3. Possibly a good pulmonologist, since the most troublesome symptom I have is periodic shortness of breath that makes a trip to the kitchen in my small house feel like a marathon, leaving me gasping for breath.
4. Mostly someone who is willing to spend TIME with me, and would be open to working with the doctors I have here in my area.
I like all my doctors here. They spend time with me. I am probably hoping for a treatment that just does not exist. But I feel that I must keep trying.
Feeling very discouraged today. Thanks for reading all this and I will appreciate any ideas and doctor recommendations you can share with me. Thanks guys!!
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