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Bronchiolitis obliterans and HIV. My experts are at a loss as to what to do!
Sep 10, 2001

I have had chronic repiratory problems since my diagnosis with HIV in 1993 when I collapsed with meningistis. I have been treated as having asthma with inhalers (Ventolin and Beclaforte)- but not very succesfully. I have seen three chest clincs. My latest one in Edinburgh have taken the most aggressive approach in getting to the bottom of my respiratory impairment. I had tests in the respiratory function lab. When I went back for the results they said that I have severe respiratory impairment and that there was no improvment after using ventolin. Last Week & had a bronchoscopy and a hight resolution CT scan. I went back for the results with my registrar and the professor. They said I had an underlying "Pseudomonis bacterial infection (not sure of spelling)which I have now been put on a two week regime of 250 mg Ciprofloxacin twice daily. But from the CT scan I also had "Bronchiolitis obliterans". The professor said that they normally would treat this with a heavy course or oral steroids - but he was wary of doing this as this may compromise my immune sytems even more ( CD4 240 Viral load undetectalbe ) - giving this bacterial infection the opportunity to "explode" and cause pneumonia. The registrar felt he would like to do an open lung biospy - but the professor was wary of this as he felt with my imparied respiratory function there were risk involved. They talked to my consultant in the G.U / H.I.V clinic. He thought there is a possability that it could be K.S They are at a loss as to what to do - use steroids and possibly compromise my immune sytem with the possability of contracting pneumonia, doing and open lung biopsy with it's inherent risks to me, and whether this is K.S or not. They have tried to do their own research into Bronchiolitis obliterans & HIV but have found little information. They are going to contact consultants in London with more experience to ask if they have come across it in HIV+ patients and for their advice.

I am on triple combintation therapy of DDI, D4T and Nevarapine.

I would be very grateful if you were able to give any information you may be aware of in Bronchiolitis obliterans & HIV.

With many thanks in advance.

Response from Dr. Dezube

Bronchiolitis obliterans is an inflammatory process in the lung, which is often the result of lung injury. Many processes can cause such an injury-- virus, toxins, medications, and so on. It is not surprising therefore that there have been reports of HIV'ers developing bronciolitis obliterans. I wonder whether your Pseudomonas infection is contributing to this process. I would be even more concerned about your Pseduomonas infection if it were repeatedly cultured from your sputum.

What would I recommend? There are just too many possibilities for what could be causing your problems. The pssibilities include bronchilitis obliterans, chronic infection, Kaposi's sarcoma, or something else. Each of these entities is treated in a different manner. Since we don't have a clear idea as to what is going on, I would recommend at this point that you have an open lung biopsy. I simply do NOT see any way around this.

I wish you luck. If you do get the open lung biopsy, please write back with the results.

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