I found this site a couple of months ago and have been reading the posts. I might be able to shed some light on this horrible problem, so sit back and listen to my story. My story may not be exactly like yours and you might not be able to do what I have done, so I do not claim to have all the answers. Maybe it will help you.
In 1989 (22 years ago) I started with the blisters in the roof of my mouth, pain and flu-like symptoms. This phase persisted for over two years. Doctors told me all sorts of things like, I had burned my mouth on pizza, suggested that I was imagining it, etc... after 2 years, the roof of my mouth (hard palate) split wide open and with a mirror, you could see a golden ball the size of my thumb. After 3 ENT specialists, I found one who took me seriously (note, he was not American trained MD, rather a Columbian trained MD) I mention this because my experience is that the American trained MD's can't get outside of the box of their receipie books.) By the way, I am a Masters prepared Registered Nurse, who taught Nursing for 15 years.
Anyway, back to the story, this ENT surgeon did take out the "golden ball" and opened all of the ethmoid bones, for drainage, the infection control MD that was on the case put me on anti-fungal experimental drugs, which made me sicker. The diagnosis came back as "Aspergillious" fungus ball. So, that's what it has been treated as ever since.
The surgery did not cure the problem, and over the past 22 years it has morphed into various other symptoms. I have had continuous drainage, bloody, pus, and foreign body elements that look like "bugs" or "worms" that come from my gums or the drainage. The nerves in the area of the hard palate, have been invaded with the stuff and they swell and pull against the bones in my face and nose.
I have gone to all of the "great" Medical Centers in my area and stilll get the run-a-round, to the point that I have lost all respect for this "wonderful" medical system that we have.
In the past year, I have realized that this condition is going to kill me unless I take it into my own hands and stop looking for some medical guru.
My own research has pointed to several conditions, that I have treated, even if I don't have a clinical lab result to prove that it is "the cause". First, I had to stop the "bugs" and found a condition called " Schistosoma" (this is a water borne parasite, usually found in third-world countries) Then, I remembered almost drowning in a very dirty river when I was 5 years old. The pictures of the Schistosoma look just like what was comming through my gums. Treatment was Praziquantel 600 mg twice a day. So, I ordered it from an overseas pharmacy and took it for 4 months. The "bugs" have stopped. But, the swelling and drainage continued. So, I had to look further, I theorized that if my original infection was of parasite origin, then maybe there was more than one kind. The another type that could have been associated with Ameoba's found in dirty water. So, again, I found a drug for that.
I had been experiencing various skin growths like flat waxy looking moles that itched and actually had several of them removed, but they kept comming back, so I went to the Dermatologist. He noticed the redness of my face and nose, like Rosacea, I told him about my history and he then prescribed an ointment for my face, Metronidazole. It didn't take long to go from my face to tasting it for the roof of my mouth. It had a positive effect. So again, I ordered it in tablet form 250mg. 3 times a day. After the 10 day treatment I felt so much better, but after comming off of the drug the symptoms started to return. So, if I've had this condition for 22 years, I guess it is going to take a while to see if this drug is going to do the trick. The only problem with staying on any anti-infective long enough to kill something like a fungus, parasite, or amoeba is that the drug will upset the natural flora of the intestines and then you have the side effect of diarrehea. So using a good acidophillus and bifidus product will help with that problem.
I would caution you regarding sharing this information with your medical doctors, because the first thing they will tell you is to not believe or read so much of what you see on the internet. And they are not going to follow any of the suggestions that I make here, remember they don't take suggestions, if anything, they try to prove you wrong.
If you decide to try any of the remedies that I have mentioned, you are not going to be able to obtain any of the products, that I mention, here in the US.
Do not try to use the Canadian Drug sites, the US has made it illegal to import from them, their sites are monitored. If, you get unsolicited emails regarding ordering drugs from overseas you should ignore them and put them in your spam box. Only order from those that you have tried and been successful. I will check back on this site from time to time for follow-up comments, but I am not comfortable with sharing my contact information.