Kissmebaby,
I soo enjoyed reading your story. It's tragic but you make me smile because I totally relate. My actinomycosis is systemic as well and I'm guessing it started when I was very young with multiple painful earaches, toothaches, tonsilitis... My mom and dad (now deceased) emigrated from Europe in the early 1950s. I am the only one in my extended family born in the U.S. I remember my mom taking me to the hospital emergency room for my earaches and tonsil problem and waiting for hours with a long line of other people. When we got to see the doctor it was 5 minutes top. I got a short term prescription for an antibiotic.
That was 50 years ago. In my humble opinion, the practice of medical care delivery hasn't really changed despite mind blowing advances in science. I'll say we need reform.
Anyway, this scenario of going to the primary doctor with upper respiratory complaints and being prescribed short term antibiotics repeated many many times from the time I was 5. Only when I reached my late 40s, the antibiotic prescriptions no longer worked. So I had sinus surgery (polyps removed) and then a tonsillectomy in 2001.
I felt great for about two years after the sinus surgery, but then my health started to deteriorate again. A coworker at the time told me she had had sinus surgery as well but that after about two years, the sinuses were as congested as before the surgery. Same thing ended up happening to me. I now think I know why.
Traumatic disruption of mucosa (such as from surgery) without appropriate long term antibiotic therapy enables Actinomyces organisms to penetrate into deeper tissues. The surgery alone acts like an unbandaided cut ripe for infection.
And even though the tonsillectomy biopsy demonstrated actinomycotic granules were in the tonsilar crypts, I guess my ENT wasn't familiar with actinomycosis, so didn't treat beyond typical post surgical short course antibiotics.
I needed to get my tonsils out. They were infected. However, this is very controversial as researchers found the tonsils are an important part of the immune system. My autoimmune condition either developed after the tonsillectomy or worsened as a result of having the tonsils removed.
I mention this because tomorrow I have an appointment with a gastrointestinal surgeon for surgical evaluation. I have chronic constipation, which is at least partially caused by the actinomycosis. A CT scan taken in 2005 showed I have a redundant cecum (the area where the appendix is) and a sigmoid colon mass among other physiological intestinal abnormalties. I am trying to make sure that I will receive appropriate antibiotic therapy for the actinomycosis with the surgery.
Over the phone the surgeon deferred any discussion of actinomycosis to an infectious diseases physician. My ID doctor wants the surgeon to get an updated intestinal biopsy showing actinomycotic granules before committing to more intensive IV treatment.
Complicating all of this is that my illness has been going on so long, I've developed multiple intestinal infections -- fungal, viral and bacterial. To eradicate, I've read you need to treat them all simultaneously. But like you all my doctors want to approach things one at a time. It's too much from them to handle, they say. You can't graduate from med school if your mind can only deal with one concept at a time. You'd never be able to make a proper diagnosis...Ahhh, and there's the problem.
The time allotted per patient to run a profitable practice only allows doctors to deal with one symptom at a time. Thus, the logical conclusion is that to be profitable, doctors can no longer properly diagnose patients because few diseases have only one symptom. Watch Dr. House!
So, my dilemma is that in order to get proper treatment, I must first jeopardize my health further by stopping the oral meds I'm now taking and open my intestines up to biopsy punctures that allow infection to move deeper into tissues, etc. -- only in the hopes that the doctor will get lucky and pick the correct site for biopsy. And there is still no guarantee that any doctor will prescribe the IV antibiotics I need having gone through this. I don't even want to think about then having to convince the insurance companies to pay for anything.
I'll keep you posted. I feel like it's taking every ounce of energy and fortitude that I can muster to try to obtain proper medical care-- and it shouldn't be this difficult.
They say if you want something done right, do it yourself. Well, what are doctors for if the patient has to self-diagnose, research everything about the illness and then teach the doctors what to do in a manner that doesn't put them on the defensive? This is as difficult as writing a thesis!
I'm going to read the files you sent now. Today, you are my light. 
