Tag Archives: Amphotericin-B

Sinus Nebulizer

My Nasoneb Sinus Nebulizer

My Nasoneb Sinus Nebulizer

The nebulizer unit - the two prongs are for each side of the sinus.

The nebulizer unit – the two prongs are for each side of the sinus.

I have had a few search engine queries about sinus nebulizers. The first time I did a sinus nebulizer treatment was in 2001. I was given nebulized Amphotericin-B for my fungal infection. I had been taking oral antifungals and was having horrendous herxheimer reactions and the ENT I saw in Southern California thought this might be a good next step to try.

I received a phone call at work from the compounding pharmacy regarding arrangement for having a nebulizer and the medication shipped to me. Then I was caught off guard. The pharmacy said that while my prescription plan would pay for the nebulizer ($150), they would not pay for the compounded Amphotericin-B. Two weeks worth of treatment would cost $1200.00. I nearly fell off my office chair. I told them that I needed to contact my insurance carrier first. I phoned and pleaded and pleaded. I was told that it was not covered because it was considered experimental treatment (yet if I had had IV Amphotericin-B it most likely would have been covered). I phoned the pharmacy back. What choice did I have? I was deathly sick and needed to kill the fungi in my sinuses. The pharmacist put me on hold and then came back with an offer. If I was willing to be put into a study, I could get the medication for $300.00. I joined the study. The medication caused all kinds of side effects for me. After many phone calls to the pharmacist to ask questions, I ended up taking my inhaler and Benadryl fifteen minutes before the twice daily treatments to stop the tightness in my throat and the severe coughing. I also after the first week, had to take a leave of absence because I had literally no voice with which to answer the phones at my desk.

Since that time I have tried Amphotericin-B again but it made me very sick. I then did itraconazole with moderate success. I have also taken nebulized antibiotics through this to get directly to the infection and not have them pass directly into my gut. All of these treatments cause headaches and nose bleeds. They are not fun to use either. I have to set up the machine near the sink, mix the saline with the medication, lean over the sink and breathe the nebulized liquid into my sinuses until it is gone.

Workers’ Compensation Defense Doctor #1 Appt. Report

By now hopefully you have read yesterday’s post about my first defense doctor appointment. I felt ill for days after that appointment. Towards the end of June of 2004 I received a copy of Dr. ______’s report from my attorney asking me to comment on it. Following are excerpts from my letter to my attorney. The text in black is Dr. ____’s comments in his report. My comments are in blue and red.

Page 3 Paragraph 2 – Dr. S (using letters to indicate doctor names mentioned in report) performed a third surgery in August of 2000 and again found sinusitis. He does not mention the culture taken 2 days before the surgery which revealed fungal growth approximately 2 weeks later.

Page 5 PHYSICAL EXAMINATION – Indeed, the false ceiling in the exam room had water stains but so did the false ceiling in my office, where she and her husband sat for an hour-and-a-half.  He did not mention that during the time I sat in his office I was wearing my mask with 2 charcoal filters in it.  He did not mention that during the hour-and-a-half appointment in his office I became hoarse and gave myself a histamine/serotonin injection.  When in the exam room, I had to remove my mask so that he could examine my sinuses and throat making me more susceptible to allergens.

She indicated that her husband would place her in a Tubex suit, also wear one, as their clothes had become contaminated.  (Tyvek)  He does not mention that he said if I stayed there he would have to phone for an ambulance to which I responded that an ambulance would make worse especially if they tried to take me to a hospital.  He also did not mention that he said if I had any more appointments that I should insist they come to me.  Was he trying to placate me into thinking he believed me or did he believe me but because he is part of the defense, he cannot say that?

Page 6 Paragraph 3 – ….yet, individuals with hypersensitivities from their workplace initially note worsening while at work, improvement away from work, and then worsening upon returning to work; but neither she nor her physicians reported this typical history….The notes from Dr. S during my October 30, 2000 office visit where he states that I walked four miles to his office.  (I was having trouble with the dizziness from the Neurontin so I walked).  I had began walking to other appointments, to meet friends for lunch, etc.  Therefore I was doing better and then became worse shortly after being allowed, as Dr. S wrote in in a note, “to attempt to return to work”.

Page 6 Paragraph 6 – Ms. Treat was the first to raise concern about possible mold exposure at her employment, especially because of a “mildewy” smell at work.  Dr. S suspected a fungal infection in January 2000 after I began blowing black mucous out of my sinuses.  I mentioned this to my boss, Mr. S, that Dr. S thought I had a fungal infection.  When I continued to become ill, Mr. S directed the district office to have our office tested.  The report done by ____ states that she was asked because of the smell in the office and a worker was constantly becoming ill to test the office building.  Even though moderate amounts of mold were in the report she stated it couldn’t have made me ill.  …We had not yet been able to get the culture in my sinuses to actually grown fungus even though I found out from Dr. M and Dr. R that this is many times the case because fungus does not like to grow outside its environment.

Page 6 Paragraph 7 – Only after her suggestion did Dr. S, and then Dr. M consider mold hypersensitivity; yet, I found no record of any of the many available tests for mold hypersensitivity.  Dr. S suspected fungus as I said in January 2000.  I told Dr. S about the test results of the mold tests done in our office when our office received them.  Dr. S said he wanted to do a RAST test on me to test for mold.  Dr. S ran the test and included some basic foods when the test was done.  The test showed an elevated IGE to many molds.  (This information is in his reports and in a letter to Dr. M.)  Dr.M considered mold hypersensitivity to mold after I was referred to him…..He could not believe how high my mold antibodies were…..Did Dr. _____ not even look at these test results?

Page 7 Paragraph 6 – Because of her persisting complaints, she eventually elected to transfer to a different work site but was also unable to tolerate her new location because of an intolerable smell.  Still, an offensive odor should not be confused with sensitivity to fumes and vapors, which was never established.   I was offered the transfer to the new school because both Dr. S and Dr. M said that I could not longer work at _________ because of my sensitivities to mold.  When I started at the new school they were painting, putting down carpet, installing, sod, etc.  By the time I arrived at the new school I had no sense of smell and could not smell the new carpet or the paint.  Therefore, I could not have thought I was reacting to something that I smelled………I was on leave not because I thought I was reacting to the new school but because I had been taking Amphotericin-B through a nebulizer and was reacting to it and having difficulty talking and Dr. S felt that if this didn’t work I might have to take another IV medication which could be life threatening considering my sensitivities.

This is just a small amount of all the comments I responded to in the first defense doctor’s report.  So what at first may have seemed like this doctor was sympathetic to my plight in stating I should have future doctors come to me, he was not.  Nor did he mention any of this in his report.  Workers’ Compensation is a tricky thing to navigate.  There was no way I could have done it without a very amazing attorney.

Me in the beginning

I have been talking to you about how ill I was.  I have shared excerpts from my soon to be published book.  You have seen a picture of the me now – 12 years out from the beginning of my illness.  For you to understand how far I have come even though I am far from over this illness, I have decided to post this picture.  The picture was taken in February 2002 on the day I arrived at the Environmental Health Center in Dallas.  I was taking nebulized Amphotericin-B through my sinuses for a continuing fungal infection and possible osteomyelitis.  I knew I had lost weight and until later when I looked at this picture didn’t realize how skinny I was and how sick I truly looked.  I had been sick at this point for about 2 1/2 years.