Yes I have seen a lot of doctors who seem to disbelieve me when I tell them my symptoms and yes I have been suffering for 24 years. My sternum has been so painful for the last year that I live 24-7 with an ice pack on it. When I received the rocephin treatment I was able to remove the ice pack for a few days. I had been having a urine stream problem and the rocephin cleared that up too but now the urine stream problem is coming back. Saw a urologist a couple days ago to see if he could do a biopsy on my prostrate but he refused this is the response I usually get, he did offer treatment for the urine stream issue which I am pursuing but I know it will not fix an infection. There was a time a few years ago when my prostrate hurt a lot now it hurts just a little Asked an ENT doctor if he could needle biopsy my right ear that has hurt since 2015 but he refused. He also did a sphenoidotomy in 2019 to allow sinuses to drain and he is the one who provided 2 weeks of rocephin treatment before he was shut down by the infectious disease doctor. He said after he talked to the infectious disease doctor that I was a hypochondriac and that the pain in my ear was now caused by TMJ not true I have been evaluated by a TMJ specialist who indicated I do not have a TMJ issue. My ENT doctor has helped me more than any other doctor with my condition and I think he wanted to help me more but he was over ruled by the infectious disease doctor.
Actinomycetes bacteria was cultured from an abscess on my jaw in October of 2020. A pathologist that examined bone samples wrote "The clinical diagnosis is osteomyelitis" and his description of what he saw matched a description of actinomycetes. I have had other biopsies that were negative but it is hard to culture when I have been off and on oral antibiotics.
My previous PCP has actinomycosis of mandible in his records but it is actually the right maxilla and he would only prescribe Augmentin which was worthless until I added another antibiotic on my own to enhance it after researching online which combinations were effective against actinomycosis. In some cases I had to back down the dosages because of diarrhea. I did not want to get C-diff and as a result was able to push the infection back some but not cure it.
Last year I got the last of my hernia mesh removed because from research I had found that
the mesh created an environment for a biofilm to exist making it almost impossible to get rid of an infection with antibiotics. Wished I had known at that time what type of bacteria I was dealing with
because I would have asked for longer culture time on the material that was removed because they typically only culture 2-5 days and actinomycetes requires a minimum of 10 days and 20 days is preferred because of the slow growth rate. I have gone back to the surgeon that removed the
last of the hernia meshes to see if she could do a biopsy in the area where the mesh was removed that is still sore but she said she could not justify it. She did order a MRI on my sternum but could
not identify a target to biopsy.
There are certain antibiotics that are known to not be effective against actinomycosis and from
my personal experiences they do not help with my condition either.
This last year I have experienced pain in the following areas. Right maxilla has felt like it was on fire when I have stopped taking oral antibiotics. Right ear hurts non-stop and left ear hurts less. I don't think there is a problem with left ear the ENT doctor indicated that pain in the right ear can
cause the left ear to hurt. Sternum hurts non-stop with varying pain levels. Right and left groin
areas hurt with more pain on right side which seems to be spreading more to the right. Lymph
nodes under arm pits hurt most of the time. There is a spot on the right side of my abdominal
area that I think is a lymph node that is painful when it is swollen but the swelling comes and goes.
Pelvis sometimes hurts like something is attacking the bone both sides. About 6 months ago
the brain area on the right side started hurting non-stop along with area around right eye. I think the headache pain is caused by pressure. The headache pain went away until the next day after I had a lumbar puncture done. Acute attacks happen periodically where jaw, throat and sternum hurt so much all I can do is lay down and wait for it to pass. The attacks can last from a couple of minutes to a half hour.
I have not been able to see another infectious disease doctor or a neurologist in Idaho because the infectious disease doctor I was seeing put "mental disorder" in my file and places I had a referral for refused to see me based on my medical record. According to my advocate that entry has recently been removed but I need to verify.
My background I used to repair refrigerator sized super computers and design circuit boards all self taught. A few years ago I was offered a job repairing MRI's but had to turn it down because of
my health. I have spent more than 1000 hours researching actinomycosis and think I know more about it than most doctors I have seen. I sent this twice not sure first reply went through.