What follows below is an intentional double post. I posted it first under another one of Pab's topics, elsewhere, and then I got to thinking that the info belonged here under this topic for benefit of anyone else who might find it more easily here. Therefore, I'm going to copy and paste the same info here also.
Peggy,
Our daughter has had some of the same issues that your son has had with the long-standing sinus infections and low IgA for many years. Fortunately for her, the sinus problems of many years' duration (decades, actually) finally resolved with long-term abx for LD. Even her low IgA came back up into the normal range again. (They didn't ever measure IgA1 vs IgA2 on her, so I don't know if this is a newer test or just a different lab which Dr. J. used for your son, as you posted elsewhere under a separate topic.)
However, the idea of checking for MARCoNS (Multiple Antibiotic Resistant Coagulase Negative Staphylococcus) comes to my mind since it tends to reside in the nasal passages and can be the dickens to get rid of. Dr. Ritchie Shoemaker has been doing some interesting new research on MARCoNS and has a treatment protocol for it worked out, which he's continuing to improve.
Dr. Shoemaker doesn't treat LD, but he's darned good with some of this other stuff, so the next time you drive East, you might want to try to schedule in a stop at Pocomoke, MD to consult him. He's the fellow who has the website about chronic neurotoxins, but I don't think that any of his new info on MARCoNS is posted there.
Part of the treatment involves the use of Bactroban (an Rx antibiotic cream) applied as a nasal gel locally, as well as the application of Staphage lysate as a nasal spray for immune stimulation. I recall that TroutScout posted a while back that the Bactroban had helped his sinus problems and headaches more than anything else he'd ever used.
If you absolutely cannot make the long trek to see Dr. Shoemaker in person, then there are several AAEM doctors up in WI who should be familiar with his work since he has spoken at some of their conferences in the past. However, they wouldn't be able to do the sophisticated testing that Dr. Shoe does, although they could easily help monitor your sons for follow-up testing later, if necessary.
Personally, I'd probably want to visit Dr. Shoemaker in person to start the testing and treatment and then maybe ask one of the nearer-by AAEM doctors to do any follow-up testing, if required, and try to coordinate things with Dr. Shoe for you.
Oh, I forgot to mention that the reason that MARCoNS is so nasty is that this is a toxin-producing strain of staph. So, not only is is highly resistant to multiple antibiotics, but it also triggers a lot of toxin-mediated problems, too.
Most doctors tend to blow off staphylococcus whenever it shows up, calling it an ubiquitous contaminant, but this special strain (MARCoNS) starting to become recognized for what it is -- namely, a formidable foe. Now, whether it's there as a commensual or as a secondary, opportunistic pathogen, or how or why it got there, nevertheless, getting rid of it would seem to be a big advantage.
Because our daughter has also dealt with these low IgA issues, I used to read everything I could get my hands on about IgA deficiency. I recall reading articles about various pathogenic organisms which could destroy IgA, including some of the common pathogens which cause sinus infections and which tend to set themselves up as mixed infections of pathogens which feed off of one another and which are very, very difficult to treat.
That's why I'm thinking that a visit to Dr. Shoemaker would be wonderful, if you could swing by there on your way to or from your next visit to see Dr. J. Dr. Shoe also does some form of genetic testing, too, I think. He tests MSH levels and leptin levels, although I have no idea what the significance of that is. All I know is that his research on the MARCoNS stuff is highly technical and very thorough. I have a strong feeling that he could probably help your two boys a whole lot.
End of Insert
For anyone who is deeply interested in these issues, then here's the link to Pab's other topic, so that other participants who want to see the related information and other responses to that topic, can find that discussion more easily.
http://flash.lymenet.org/ubb/Forum1/HTML/023789.html
[This message has been edited by TX Lyme Mom (edited 15 March 2004).]