Hi All,
Thank you for reading. I apologize to everyone who made comments during my absence from my blog. I thought the comments went to my email, but I did not get any of them until now.
I have been going through a (long) phase where I thought that a health care provider might read my blog and it would negatively influence their future treatment of me. I don't know if this is the case, but getting any treatment has been a struggle. It's been a fight every step of the way due to the poor quality of doctors in Florida.
To fill you in since last July:
At some point later in 2011, the ID doctor that I had been seeing, Dr. Brust, decided I was completely nuts. Being nuts is somehow causing osteomyelitis in my jaw that is confirmed by bone biopsies.
Anyways, most patient's go through this at some point. We get sick. The incompetent doctors don't take us seriously, so we must be crazy, so they stick us on anti-depressants, they claim that it will help the "nerve pain", when the reality is they don't give a shit and don't know how to treat us, so instead of making the appropriate referrals, they put you on antidepressants.
So Dr. Brust decided that I was crazy and he couldn't help me, so instead of referring me to a psychiatrist, he put me on Cymbalta. Then I confirmed his diagnosis of insanity by having a severe allergic reaction to Cymbalta. Cymbalta is supposed to relax you. It is a serotonin uptake inhibitor. Serotonin relaxes you if you are deficient. If you already have enough and you over dose on serotonin (which is what he did to me) then you may become anxious, over aggressive, agitated etc. I had all the reactions of a severe overdose.
You know the paragraph that says, call your doctor immediately if you have these symptoms. So I called him and he's like ah ha!! People that react to Cymbalta negatively are bipolar. I pointed out the fact that he overdosed me on serotonin, but he didn't want to hear about that.
So after I left his office, he called ALL of my doctors to tell them I was nuts..He says it was to consult with them because he was so concerned over my mental health (uh huh right). My GP told me he called him to tell him I was nuts, so now I have no doctors to treat me. Nice..jerk. Despite that he kept me on antibiotics - 3000 mg of Amoxicillin a day. If I really was nuts, why didn't he refer me to a psychiatrist.
So from there I sent all of my records to the oral/maxillofacial surgery dept at Mayo. They declined my request to be evaluated, stating they saw nothing surgical and on any note that said "facial pain", they circled it in red. I, needless to say was furious. Was still having problems with the entire right side of my head being swollen and my right lower jaw symptoms getting worse. (Since then I have had 9 surgical debridements).
Then I found someone in FL with a cavitat machine. A biological dentist in Clearwater, FL, Dr. Ray Behm. He did an extremely thorough evaluation and did muscle testing, but refused to use the cavitat machine on me. I was so hopeful. I was sitting right beside the machine and he wouldn't use it. He told me that all of my problems were coming from my jaw alignment and an intolerance to my mercury fillings. Perhaps my poor jaw alignment and poor tolerance to mercury fillings are the root cause of my problems (lol pun intended) but replacing my fillings will not debride my jaw. Once again furious!!
Being a physical therapist, I know it's not my alignment. So now I have no one that will help me(again) and it's not the first time I have been lectured on my alignment; however, I didn't have alignment problems until after the extractions, which were a result of the problem not the cause.
So as a PT, I have been avoiding my normal treatment modalities that I use to help others. These being ultrasound, electrical stimulation and massage on myself. I didn't want to use them out of fear that they might spread of the infection. But in my fury, I figured what the heck. I got out my ETPS unit (http://www.acumedmedical.ca/) and started using it on my jaw and in my mouth on the lump on the right maxilla. I also started massaging the heck out of every tight jaw muscle that I had on both sides, inside and out. The ETPS is an electrical stimulation unit that can be used for electrical acupuncture. It doesn't break the skin, you just use it on the acupuncture points or trigger points or any tight muscles that you might have or in my case on the weird lump in my mouth and my swollen face.
Three days after starting the ETPS, I started feeling really nauseous and I had this horrible taste pouring out of the right maxilla in the back. I couldn't see anything in my mouth, but ugh the taste was horrible. Since I was swallowing all the crap, I finally threw up and then threw up some more. I threw up most of that day and then my stomach was upset for a week after that, but the swelling in the right side of my face was gone!!
So tell me please, how do 80+ different health care providers including 10 oral surgeons (includng guru Dr. Marx) and a multitude of radiologists miss seeing an abscess in the right side of my face so large that I vomited ALL day long from the drainage? That abscess was there for 14 MONTHS!! So yes furious again at the pure incompetence of our physicians and radiologists regarding osteomyelitis and apparently abscesses.
About 3 weeks later, it filled back up. My face swelled again. I used the ETPS and it drained again. Again causing me to vomit multiple times in one day.
So then I started seeing a holistic doctor and I had a variety of treatments. Ozone injections, vitamin C infusions, vitamin bag infusions etc. All these helped but not enough to kill the problem. So I went back to the biological dentist, Ray Behm and had to convince him to debride my right upper and lower jaw. Then had to convince him to send the results for biopsy to make the ID doctor happy.
The biopsy results came back. Right maxilla - stated ischemic marrow atrophy and the right mandible - chronic non-suppurative osteomyelitis of the new bone..
Despite the debridement, I still had a large lump in the right maxilla. The inflammation around it spread up into my ear and sometimes my eye on the right. My ear frequently felt stuffed up. My right mandible had occasional pains still, but was much better.
My left maxilla and mandible began having increasing symptoms.
I faxed the results to the ID doctor. First his office said they didn't get the results. So I faxed them again, didn't hear from the doctor. So 3 weeks after the surgery, I called his office again. I spoke to his nurse. She read me the report (that I faxed in) and tried to leave off the part that said chronic non-suppurative osteomyelitis in the right maxilla. So I read it to her. She stuttered a little and then told me that the doctor had called the pathologist and non-suppurative osteomyelitis is not infectious, so he doesn't need to see me ever again! I can stop the antiobiotics. Nice - jerk and not even true at least the part about chronic non-suppurative not being infectious.
After over a year on antibiotics I'm discharged without any follow-up appointments to make sure that I am really doing okay. Which I definately AM NOT!!
Since then I have been forced to just treat myself. I have continued to use the ETPS, liquid Vitamin C and occasionally ultrasound.
The lump that was left on the right maxilla is gradually shrinking with the use of the ETPS. As the lump becomes smaller it puts stress on the channel linking my jaw bone to my cheek. This channel s causes the abscess in my face. It drained slowly over a couple of weeks leaving a horrible taste in my mouth. All of my food tasted like dirt for two weeks. It took me a while to figure out that it was an abcess draining and then it opened up into a big painful hole in my mouth, but the channel is now gone! Yay.
I went to a walk-in clinic, to try to get it cultured while it was draining. They refused to see me and recommended that I go see the first lousy oral surgeon that mis-diagnosed me a year and a half ago. (yes more frustration). I rinsed with salt water and iodine water (2 drops of iodine in 8 oz H2O) and it healed up. I have one more channel way back on the right connecting the gradually shrinking lump to my cheek. I look forward to the day it rips open and then disappears! It will hurt, but then it will be gone. It's very close. A few more weeks and the right upper jaw is going to be all better (I think).
The right lower, I think needs debrided again and then an area of ragged bone needs smoothed out.
Now in the last two weeks, the left upper and lower jaw has gotten dramatically worse. I called the biological dentist. I was asked if I was ready to replace my mercury fillings with non-mercury. I'm like NO..I still have problems with the bone and don't have any money left.
Out of desperation I emailed the last oral surgeon that did the extractions on the manible. I sent him a copy of my last biopsy report. I am scheduled to have 3 teeth extracted on the left. I hope once the port for the bacteria on the left is removed (the teeth), my body and Vitamin C will kill the infection. Will see. Will be better at posting, so the next won't be so long.
One more interesting thing. My IPad takes thermogram type pictures. The entire right side of my face and neck has significantly decreased blood flow, especially where the remaining weird lump (you know the imaginary one that I'm creating due to my insanity..lol) is at.
So to summarize..in the last 2 years I have seen and been misdiagnosed, criticized and degraded by over 80 health care professionals. My confidentiality has been seriously violated by the ID doctor. And the kicker, in my world I am a very well respected health care professional and I can't even get proper treatment!!
All I can say is be careful, don't take your doctor's word as the word of God! Keep searching. If you feel ill and have facial pain, DON'T fall for the diagnosis of neuralgia. Neuralgia will cause pain, but not symptoms of infection and I don't believe in neuralgia without an organic caused like osteomyelitis.
As a physical therapist, at least 90% of my patient's come to me with incorrect diagnosis from their referring physicians. Why believe me? I was voted by the people of this area as "best physical therapist" for the last 6 years. I wouldn't have achieved this status, if I didn't know how to evaluate my patients.
Thank you for reading. I apologize to everyone who made comments during my absence from my blog. I thought the comments went to my email, but I did not get any of them until now.
I have been going through a (long) phase where I thought that a health care provider might read my blog and it would negatively influence their future treatment of me. I don't know if this is the case, but getting any treatment has been a struggle. It's been a fight every step of the way due to the poor quality of doctors in Florida.
To fill you in since last July:
At some point later in 2011, the ID doctor that I had been seeing, Dr. Brust, decided I was completely nuts. Being nuts is somehow causing osteomyelitis in my jaw that is confirmed by bone biopsies.
Anyways, most patient's go through this at some point. We get sick. The incompetent doctors don't take us seriously, so we must be crazy, so they stick us on anti-depressants, they claim that it will help the "nerve pain", when the reality is they don't give a shit and don't know how to treat us, so instead of making the appropriate referrals, they put you on antidepressants.
So Dr. Brust decided that I was crazy and he couldn't help me, so instead of referring me to a psychiatrist, he put me on Cymbalta. Then I confirmed his diagnosis of insanity by having a severe allergic reaction to Cymbalta. Cymbalta is supposed to relax you. It is a serotonin uptake inhibitor. Serotonin relaxes you if you are deficient. If you already have enough and you over dose on serotonin (which is what he did to me) then you may become anxious, over aggressive, agitated etc. I had all the reactions of a severe overdose.
You know the paragraph that says, call your doctor immediately if you have these symptoms. So I called him and he's like ah ha!! People that react to Cymbalta negatively are bipolar. I pointed out the fact that he overdosed me on serotonin, but he didn't want to hear about that.
So after I left his office, he called ALL of my doctors to tell them I was nuts..He says it was to consult with them because he was so concerned over my mental health (uh huh right). My GP told me he called him to tell him I was nuts, so now I have no doctors to treat me. Nice..jerk. Despite that he kept me on antibiotics - 3000 mg of Amoxicillin a day. If I really was nuts, why didn't he refer me to a psychiatrist.
So from there I sent all of my records to the oral/maxillofacial surgery dept at Mayo. They declined my request to be evaluated, stating they saw nothing surgical and on any note that said "facial pain", they circled it in red. I, needless to say was furious. Was still having problems with the entire right side of my head being swollen and my right lower jaw symptoms getting worse. (Since then I have had 9 surgical debridements).
Then I found someone in FL with a cavitat machine. A biological dentist in Clearwater, FL, Dr. Ray Behm. He did an extremely thorough evaluation and did muscle testing, but refused to use the cavitat machine on me. I was so hopeful. I was sitting right beside the machine and he wouldn't use it. He told me that all of my problems were coming from my jaw alignment and an intolerance to my mercury fillings. Perhaps my poor jaw alignment and poor tolerance to mercury fillings are the root cause of my problems (lol pun intended) but replacing my fillings will not debride my jaw. Once again furious!!
Being a physical therapist, I know it's not my alignment. So now I have no one that will help me(again) and it's not the first time I have been lectured on my alignment; however, I didn't have alignment problems until after the extractions, which were a result of the problem not the cause.
So as a PT, I have been avoiding my normal treatment modalities that I use to help others. These being ultrasound, electrical stimulation and massage on myself. I didn't want to use them out of fear that they might spread of the infection. But in my fury, I figured what the heck. I got out my ETPS unit (http://www.acumedmedical.ca/) and started using it on my jaw and in my mouth on the lump on the right maxilla. I also started massaging the heck out of every tight jaw muscle that I had on both sides, inside and out. The ETPS is an electrical stimulation unit that can be used for electrical acupuncture. It doesn't break the skin, you just use it on the acupuncture points or trigger points or any tight muscles that you might have or in my case on the weird lump in my mouth and my swollen face.
Three days after starting the ETPS, I started feeling really nauseous and I had this horrible taste pouring out of the right maxilla in the back. I couldn't see anything in my mouth, but ugh the taste was horrible. Since I was swallowing all the crap, I finally threw up and then threw up some more. I threw up most of that day and then my stomach was upset for a week after that, but the swelling in the right side of my face was gone!!
So tell me please, how do 80+ different health care providers including 10 oral surgeons (includng guru Dr. Marx) and a multitude of radiologists miss seeing an abscess in the right side of my face so large that I vomited ALL day long from the drainage? That abscess was there for 14 MONTHS!! So yes furious again at the pure incompetence of our physicians and radiologists regarding osteomyelitis and apparently abscesses.
About 3 weeks later, it filled back up. My face swelled again. I used the ETPS and it drained again. Again causing me to vomit multiple times in one day.
So then I started seeing a holistic doctor and I had a variety of treatments. Ozone injections, vitamin C infusions, vitamin bag infusions etc. All these helped but not enough to kill the problem. So I went back to the biological dentist, Ray Behm and had to convince him to debride my right upper and lower jaw. Then had to convince him to send the results for biopsy to make the ID doctor happy.
The biopsy results came back. Right maxilla - stated ischemic marrow atrophy and the right mandible - chronic non-suppurative osteomyelitis of the new bone..
Despite the debridement, I still had a large lump in the right maxilla. The inflammation around it spread up into my ear and sometimes my eye on the right. My ear frequently felt stuffed up. My right mandible had occasional pains still, but was much better.
My left maxilla and mandible began having increasing symptoms.
I faxed the results to the ID doctor. First his office said they didn't get the results. So I faxed them again, didn't hear from the doctor. So 3 weeks after the surgery, I called his office again. I spoke to his nurse. She read me the report (that I faxed in) and tried to leave off the part that said chronic non-suppurative osteomyelitis in the right maxilla. So I read it to her. She stuttered a little and then told me that the doctor had called the pathologist and non-suppurative osteomyelitis is not infectious, so he doesn't need to see me ever again! I can stop the antiobiotics. Nice - jerk and not even true at least the part about chronic non-suppurative not being infectious.
After over a year on antibiotics I'm discharged without any follow-up appointments to make sure that I am really doing okay. Which I definately AM NOT!!
Since then I have been forced to just treat myself. I have continued to use the ETPS, liquid Vitamin C and occasionally ultrasound.
The lump that was left on the right maxilla is gradually shrinking with the use of the ETPS. As the lump becomes smaller it puts stress on the channel linking my jaw bone to my cheek. This channel s causes the abscess in my face. It drained slowly over a couple of weeks leaving a horrible taste in my mouth. All of my food tasted like dirt for two weeks. It took me a while to figure out that it was an abcess draining and then it opened up into a big painful hole in my mouth, but the channel is now gone! Yay.
I went to a walk-in clinic, to try to get it cultured while it was draining. They refused to see me and recommended that I go see the first lousy oral surgeon that mis-diagnosed me a year and a half ago. (yes more frustration). I rinsed with salt water and iodine water (2 drops of iodine in 8 oz H2O) and it healed up. I have one more channel way back on the right connecting the gradually shrinking lump to my cheek. I look forward to the day it rips open and then disappears! It will hurt, but then it will be gone. It's very close. A few more weeks and the right upper jaw is going to be all better (I think).
The right lower, I think needs debrided again and then an area of ragged bone needs smoothed out.
Now in the last two weeks, the left upper and lower jaw has gotten dramatically worse. I called the biological dentist. I was asked if I was ready to replace my mercury fillings with non-mercury. I'm like NO..I still have problems with the bone and don't have any money left.
Out of desperation I emailed the last oral surgeon that did the extractions on the manible. I sent him a copy of my last biopsy report. I am scheduled to have 3 teeth extracted on the left. I hope once the port for the bacteria on the left is removed (the teeth), my body and Vitamin C will kill the infection. Will see. Will be better at posting, so the next won't be so long.
One more interesting thing. My IPad takes thermogram type pictures. The entire right side of my face and neck has significantly decreased blood flow, especially where the remaining weird lump (you know the imaginary one that I'm creating due to my insanity..lol) is at.
So to summarize..in the last 2 years I have seen and been misdiagnosed, criticized and degraded by over 80 health care professionals. My confidentiality has been seriously violated by the ID doctor. And the kicker, in my world I am a very well respected health care professional and I can't even get proper treatment!!
All I can say is be careful, don't take your doctor's word as the word of God! Keep searching. If you feel ill and have facial pain, DON'T fall for the diagnosis of neuralgia. Neuralgia will cause pain, but not symptoms of infection and I don't believe in neuralgia without an organic caused like osteomyelitis.
As a physical therapist, at least 90% of my patient's come to me with incorrect diagnosis from their referring physicians. Why believe me? I was voted by the people of this area as "best physical therapist" for the last 6 years. I wouldn't have achieved this status, if I didn't know how to evaluate my patients.
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