Jul 2, 2004
I'm not sure which forum this question should be in but anyway here it goes! I'm a 28 yr old hiv+ female and my husband is also hiv+, my question is actually about him. We were both diagnosed last Aug. He had been very sick but is feeling much better now, he had a swollen lymph node on his shoulder blade and had it removed about 2 1/2 mths ago. he was diagnosed with MAI, but now he has one on the other side and it is huge. It is bigger than a walnut, more like the size of a golf ball and just sticks out and is very painful. He is taking very stong painkillers to combat the pain which knock him out and I don't like that he is taking them. One surgeon told him that nothing could be done with it that it is because of the MAI and will go away with the meds he is taking for the MAI which he could be taking for a yr. He can't go on with it like this, he is in constant pain, it is so red and shiny and looks like it is about to bust open. He goes to see his dr. tomorrow and hopefully she will see it and say that something needs to be done with it. He can't even wear anything over it, it hurts so much. Please help me out if you know anything about this.
Response from Dr. Conway
Based on what you are saying, it would appear that your husband has advanced immune disease, given the diagnosis of MAI. Now, enlarged lymph glands are often due to MAI, but there are many other causes of them. It is true to say that if the enlarged lymph nodes are due to MAI, the best treatment is a combination of drugs directed against the MAI (such as clarithromycin and ethambutol, for instance) along with HAART to restore the immune system. Over time, the MAI disease will just respond to it and the enlarged lymph galnd would get better. So just monitoring the situation may be one option.
In some cases, we have gone on to do a lymph node biopsy which could show the MAI or some other disease that may need another treatment.
The best advice I could give you is to discuss these issues with your doctor to make sure you understand her approach to this (just treating and monitoring closely or doing something else) and are comfortable with it.
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