The Dreaded Defense Doctor Appointments and Workers’ Compensation – Appt. 1

I have had several search engine searches regarding workers’ compensation lead others to this blog.  Because of this I am going to talk a little about my experiences with workers’ compensation doctor appointments.

I have talked about going to see the psychiatrists for my workers’ compensation case. I have yet to talk about some of the doctors the defense sent me to and how those appointments went. My first appointment aside from the psychiatrist was in February 2004 to a doctor who practices in internal medicine and rheumatology. His office was a 2 1/2 hour drive from my home and my appointment was scheduled for 10:15. The doctor arrived at 10:45 and I made it into his office at 11:00 a.m.

TAKEN FROM MY LETTER TO MY ATTORNEY AFTER MY VISIT:

I was told by Dr. ____ that he had a fan in his office and we were located near an exit door and the door could be opened if we needed to bring in air or we could go outside. I was becoming hoarse and told the doctor that as long as the symptoms didn’t get any worse I would stay inside.

Dr. ____  asked me to give him a history and I began the story of everything beginning my first day of work in May 1999. I talked about surgeries, osteomyelitis (bone infections), mold testing of the office, my testings, my reactions and my seizure like reactions. He had me explain what a reaction was like and I explained that I first get hoarse, then have spasms in my throat and then cannot breathe and my body goes as stiff as a board then when the spasm ends, I gasp for air and my body begins to go into tremors. I became emotional as I explained an anaphylactic reaction I had in June 2001 from a reaction to an IV of Primaxin.  I was alone and I could not see, had difficulty walking to the phone ad then fell on the coffee table and was not able to lift my arm to get the phone and when I finally was able to get the phone I could not see the key pad. Dr. _____  then said that if it was too difficult he would just get the rest of the information from my files.  (So why couldn’t he have just done it anyway instead of putting me through all that?)

The last complaint that I had listed was that I felt like I was suffering the “girl in the bubble” syndrome.  The doctor’s response was that he had difficulty walking past the perfume counters in stores and had a mild sense of how I must feel.  (Give me a break here.  He had no clue.)

Dr.  ____ then informed me he would be dictating a summary in my presence.  Dr. ___ then said that there would be a brief physical exam and we could leave…..My husband and I followed him to an exam room in the far end of the building.  I made a comment that there was no carpeting to bother me in there.  He asked me to remove my outer garments and put on an exam gown.  I asked if he had a paper gown because the cloth gown was too scented…..so I managed with paper exam cloths and wrapped two of them around me….First he took my blood pressure and pulse.  He then examined my lymph nodes.  He asked me to lie down.  I began to tremor slightly on my right side and at first thought it was just because I was cold…….The tremors became worse and I was beginning to feel disconnected.  My husband asked me if I was alright and I had a difficult time answering him.  Dr.____ asked if I was alright and I had a difficult time answering him.  I told him there was mold in the office.  He looked up and said it was possibly the ceiling.  I looked up and noticed a great deal of water spotting on the ceiling tiles.

…He directed me to a nearby exit.  My husband helped me dress and I walked outside in a rush without putting on my shoes…….When Dr. ____ came out he said, “You have had these many times.”  I replied that I had.  He asked if there was anything he could do….I took my shot and Dr. ____ said that he would be in the office if we needed him.

I began to cry.  My clothes were contaminated.  I could not afford to keep this up.  I couldn’t just go out and buy a new jacket, clothes and shoes….Before Dr.____ returned to his office he said that if I had any more appointments like this, I should demand that I be seen at home in my safe environment.

….I then went to my bed to lie down.  I felt like I had the flu.  I spent the entire evening in bed…..everything ached and I was having a lot of brain fog and disconnection….

Before you say, “It sounds like he has an understanding and is sympathetic to this poor woman”, wait until you read my response to his report in the next post.  A side note is that when I searched the doctor’s name so I could verify the distance from my house to the office, I discovered that he passed in January of 2012.

 

Antifungal Resistant Aspergillus Strain

Aspergillus was cultured from my sinuses in 2000. I have been on some sort of antifungal or another ever since. whenever we try to either lower the dose or stop, my symptoms return. I belong to a support group for Aspergillus through yahoo groups. This support group is part of the Fungal Research Trust.

http://www.aspergillus.org.uk/newpatients

http://www.fungalresearchtrust.org

Recently the trust started a blog. On September 20, 2012 a newsbite was posted about resistant strains of Aspergillus and the possibility of the causation being from farmers also using azoles (antifungals) on crops. We could be breathing in a resistant strain of Aspergillus. Knowing what I have experienced from my exposure to Aspergillus along with other molds, this is very frightening. Read the blog post at:

http://aspergillusblog.blogspot.com/2012/09/newsbite-first-recorded-case-of.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+blogspot%2FRJGgV+%28The+Aspergillus+Website+blog%29&utm_content=Yahoo%21+Mail

Clicking more will take you to the entire article.

http://www.eurosurveillance.org/ViewArticle.aspx?ArticleId=20262

I knew I was sick but

Someone asked me a short time ago to tell more about me.  Rather than go from the beginning I am going to talk about being sent to Dallas and getting my diagnosis.  I knew I was sick but had no idea how far reaching the mold exposure had been in terms of my body.

I had been sick for about 2 1/2 years when I was finally sent to Dr. William Rea at the Environmental Health Center-Dallas through my ENT.  I arrived on a cold day in February 2002.   After meeting with Dr. Rea, doing lots of tests and being observed, a letter was written for me to submit to my doctors here and to my attorney for my workers’ compensation case.  Dr. Rea wrote an extended letter and I am going to try to give a synopsis of what he found wrong.

Toxic Encephalopathy secondary to mold, mold toxin and chemical exposure (when I was moved from the school with the mold to a new school being painted, etc. while we were trying to set it up for school to start)

Toxic Effects of Petrochemicals and Solvents

Toxic Effects of Mold and Mold Toxin

Immune Deregulation

Allergic Rhinitis

Food Sensitivity (only safe foods at the time were rabbit, venison, deer, elk, cranberries, acorn squash, eggs, raspberries)

Mold Sensitivity

Pollen Sensitivity

Chemical Sensitivity

Chronic Sinusitits

Chronic Fatigue

Fibromyalgia

Autonomic Nervous System Dysfunction

Multi-organ system dysfunction

Neurotoxicity based on SPECT scan

Hyper metabolic and hyper reactive state

I couldn’t sleep, I was on a nebulized antifungal, I was on so many medications when I arrived.  I would sit and look at the television and it was as if the screen was narrowing and moving toward me (a very strange sensation), my depth perception was a mess.  I would be in the testing room, take a drink my from glass water bottle and then set it back down.  Bam, glass and water would be all over the floor.  I couldn’t gauge when the bottle was on the floor unless I slowly lowered it and listened for it to touch the ground before I released it.  My short-term memory was just that, short-term.  My husband made me walk from our condo to the center so that I would be able to find it because I would not have a car when he went home.  Every morning we would walk the four blocks and when we got to the parking lot I wouldn’t remember where I needed to enter the building and my husband would once again have to show me.  Once in the building when I would leave the testing or exam rooms to go to the sauna, I would invariably turn towards the exit.  I just couldn’t keep my directions straight.  So much goes on at the center.  There is doctor appointments, lab appointments, provocation/neutralization skin testing, sauna, IV’s.  I soon learned that my weekly appointment calendar was my only salvation.  Every Friday I would schedule all my appointments for the next week.  I lived by that appointment book.  It was the only way I could remember where I was supposed to be at any given time as long as I could remember how to get from point “A” to point “B”.

In fact when I returned home after a long stay in 2003 and moved into my “safe” home my memory was still a mess.  One day I got up and put a pot of beans on to cook in the kitchen and then went back into my bedroom.  I still had no furniture in the kitchen or living room.  I pretty much lived in my bedroom with my army cot and blankets, my CD player and my television.  One afternoon my smoke alarms started blaring (all four of them from the entrance to each bedroom).  I began to panic!  MY HOUSE WAS ON FIRE!  Was there a wiring issue?  What was going on?  What would I do if my house burned down?  Where would I go?  I began walking through the house looking for any signs of trouble.  Then as I walked towards the kitchen it dawned on me that I had beans on the stove.  The beans had boiled dry and stuck to the bottom of the pan.  Since that time I have to set a timer whenever I put something on the stove.  The caveat to that is that I have to be within ear range of the timer.  I have turned the timer on and went outdoors only to see smoke coming out of my kitchen vent.

My autonomic nervous system was a mess too.  I would go to bed and the slightest movement (me rolling over or me just moving in the bed) would send me into horrible state.  Imagine being at the top of one of those rides at an amusement park where you are raised to the top and then dropped.  That is what it felt like to me.  And this would happen over and over again all night long.  If I tried to get up and go to the bathroom the mere act of lying back down would set it off.  This went on for months and months.  I haven’t had a severe reaction like that in a very long time.  I still get that sensation occasionally but thankfully it is not my nightly companion.

My life has been turned upside down and inside out.  I say I live in the Twilight Zone or Bizarro Land.  I make the most of what I can do and have to accept my limitations and my losses.  The depression was eating me alive from the inside out and I had to make a decision.  Either I let the depression and loneliness and sadness take over my life or I had to learn to change the way I perceived this invisible illness.  I have chosen to try to change my perspective.  I try to stay positive, I try not to feel envious of what others can or are doing, I try to be grateful for what I have and not dwell on what I don’t have.  When friends tell me they are going on a cruise, or going to another country or on some long weekend, jealousy starts to set in and depression rears its ugly head.  Sometimes it is hard to hear the stories from their trips when they return.  I had been home from Dallas for about a year when my husband had the opportunity to go to England as a chaperone with his high school.  Oh how I was envious.  I wanted him to go, but I didn’t want him to go.  I didn’t want to participate in the plans, didn’t want to hear where he was going, didn’t want to think about being here alone at home with him far away having fun.  Once he was gone I decided that this allowed me the freedom to watch whatever movie I wanted to watch or watch movies all day.  I could sit in my bed and read all day if I wanted to.  I ate when I wanted to.  I got in my car and drove around just for the sake of driving around.  I was good until he came home with pictures from the trip.  Sadness welled up inside of me as he told me where he had gone and explained what he had seen.  I wanted to just bolt.  I didn’t want to hear the stories, didn’t want to see the pictures, didn’t want to feel the sadness.  Finally I realized I wasn’t being fair to him.  He was excited about this amazing journey and what he had seen and done.  I listened and I looked and I put on my brave face.  I have to say, however, that I haven’t looked at those pictures since and hate it when we are watching a movie and he tells me that he has been to that fountain or that museum.  I may be getting stronger every day but the realization that I probably will never make that kind of trip is hard but I am becoming more okay with it as time goes by.

Mold – trigeminal neuralgia

Mold and trigeminal neuralgia were put in the search engine today.  I have talked vaguely about my having trigeminal neuralgia.  For those not familiar with trigeminal neuralgia, it is a condition that affects the trigeminal nerve, one of the largest nerves in the head.  It is responsible for sending impulses of touch, pain, and pressure from the face, jaw, gums, forehead, and around the eyes.  Trigeminal neuralgia can feel like a sudden severe shock-like or stabbing pain on one side of the face.  These attacks can last several seconds and happen over and over throughout the day.  Some attacks can last months at a time.

I began developing trigeminal neuralgia as the bacterial and fungal infections in my sinuses continued bombarding me one right after the other.  I developed osteomyelitis (bone infection) in the sinus bone.  I had several surgeries to keep scar tissue and the infection cleared from the bone and the sinuses in general.  The pain was so intense.  I was on pain medication from surgery and it seemed to help.  I couldn’t stop the pain medication or I couldn’t function.  I needed a pain pill in order to stop the pain in the morning so I could get up and start my day and head to work.  I needed a pain pill sometimes in the middle of the day so I could focus on my job.  Lastly I needed a pain pill to numb myself enough to be able to try to sleep.  The pain was so intense that I felt like an ice pick was being jabbed into my left eye and twisted.  The pain would radiate down through my left maxillary sinus, my jaw and my left ear.

When my ENT thought I had been on pain medication too long, he decided to try me on Neurontin (Gabapentin).  It took a large dose to calm the nerves down.  I think the maximum dose was 1800 mg. and I was on 1200 mg.  The face and eye pain calmed down but at the expense of the side effects of the Neurontin.  The side effects for me were dizziness.  I was so dizzy that I was afraid to drive and once walked several miles to and from his office to avoid driving and the possibility of an accident.

As time as moved and we have been able to keep my sinuses in better order, the neuralgia is less frequent.  An exposure to a chemical that I might come into contact with will cause the nasal passages to swell, produce large amounts of mucous and trigger the neuralgia and the pain.  I no longer do well on Neurontin or pain medication (probably from taking so much of it).  Now when it flares I just have to apply heat and rest and wait it out.  A sinus infection whether bacterial or fungal will also trigger the return of the symptoms.  We have to keep my antifungal treatment at a level that keeps the fungal infections from re-occuring as often.  I am including a picture of the trigeminal nerve to show how much of the left side of my face is affected when I have a flare-up.

When does a Herxheimer reaction start?

When does a Herxheimer reaction start?  This was a search engine search that led someone to my blog most likely because of my post titled “What does flea medicine and antifungals have in common?”  In this post I talk about taking small amounts of antifungals and then experiencing a Herxheimer reaction.

I did a quick search on Herxheimer reactions to see what was said about them in comparison with my own reactions, symptoms and time frame of onset.  In my previous post I described a Herxheimer reaction.  A Herxheimer reaction sometimes just called a Herx is when the bacteria, or fungus in my case, start dying off they release endotoxins.  If more endotoxins are released than the body can rid itself of severe symptoms can occur.

What I learned in my search was that these symptoms are varied, may be unexpected, subjective or objective.  Some patients have noted that these reactions make their disease symptoms seem suddenly worse.  Along with exacerbation of the original symptoms new symptoms may also develop.  Many of these symptoms reported have been (those I experience/experienced are in blue):  increased joint or muscle pain, headaches, chills, low fever, drop in blood pressure, hives, rash, heavy perspiration,  nausea, bloating, dizziness, constipation, heart palpitations, flu-like symptoms, mental confusion, uncoordinated movements, difficulty breathing, throat swelling and coughing.

The onset, frequency and duration are very individualistic.  The onset of a Herxheimer reaction can be as quickly as 1-2 hours up to 10 days. The first time I experienced it was a couple of days after starting the antifungal, Lamisil, and increasing it from 1/16 of a table to 1/8 of a tablet.  The second time I experienced it was about an hour after taking a new antifungal drug because the Lamisil was making me ill.   Some patients experience this reaction only once or twice and others continue some sort of Herxheimer reaction throughout their course of treatment.  Some have found that Benadryl is helpful during a reaction.  For me the answer was an epi-pen (epinephrine in an injectable pen) to stop the reactions.  I relied on my epi-pen more than once to get through these types of reactions.  I did use Benadryl during some of my antifungal nebulized treatments to avoid having all the symptoms it caused.  I was taking Amphotericin-B, sometimes referred to as Ampho-terrible, through a sinus nebulizer.  The first time I took it I developed a horrible cough and was told by the pharmacy to take my ventolin inhaler 15 minutes before my treatment.  The second time I took my treatment I developed tightness in my chest.  I was then advised to take Benadryl along with my inhaler 15 minutes before treatment.  A year later when I needed Benadryl to help me get through reactions to a much-needed antibiotic, I had a horrible reaction to it.

Another thing I found interesting was that for some the reactions can last for quite some time or over the entire course of treatment.  I ran a low-grade fever for six months or more.  The fever was anywhere from 99.7 to 100.9. 

In answer to the question of when a Herxheimer reaction starts, there is no definitive answer.  Everyone’s reaction and time frame is individualistic.  It is probably a good idea to document the onset of symptoms as well as the type of reactions in relation to  the start of any new medication or treatment.  I would also recommend documenting anything such as Benadryl that may have relieved the symptoms, the duration of symptoms and whether or not they occur more than once.  Most importantly I strongly urge anyone who believes they are suffering from a Herxheimer reaction to contact their physician for advice.

Disclaimer:  While many illnesses and treatments may have  things in common, each illness and its treatment is individualistic.   Nothing I write in my blog posts should be construed as medical advice.  All decisions about your health and treatment should be made in consultation with your physician or other licenced health care provider. 

What does flea medicine and antifungals have in common?

What does flea medicine and antifungals have in common?  What an odd question you might ask.  Well when treating animals for fleas, the medication only kills the live fleas and usually does not kill the eggs.  For this reason animals may have to be treated more than once to get rid of the fleas as the eggs continue to  hatch.

Antifungals work on the same principle.  Antifungals kill off the live fungi but does not deal with all spores that have yet to germinate and become live.  I have been treating myself with one type of antifungal or another for years.  In the beginning the fungal infection was so bad that I would experience herxheimer reactions when taking even the smallest amount of an antifungal and go into an anaphylactic reaction.

A herxheimer reaction sometimes just called a Herx is when the bacteria, or fungus in my case, start dying off they release endotoxins.  If more endotoxins are released than the body can rid itself of severe symptoms can occur.  Some of these symptoms can be fever, chills, headache, and hyperventilation.  For me the symptoms were tightness in the chest, difficulty breathing, stomach cramps, coughing, the feeling that my throat was constricted and dizziness.  More than once I had to rely on an epi-pen (epinephrine in an injectable pen) to stop the reactions and calm things down.  Of course, the downside of taking epinephrine is a faster heart rate, possible dizziness or light headedness, headache and tremors.  I had to take the epinephrine to stop one set of symptoms but then got another set in exchange.

Recently we decided to see how little antifungal I needed to avoid having a return of a major sinus infection.  I was originally on 400 mg. of compounded Miconazole.  I dropped to 300 and waited a month.  I was still ok so we dropped it to 200 for a month and I was still ok.  I dropped it to 100 mg and within a week my sinuses were inflamed and I had the beginning of an infection so we immediately put it back to 200 mg. and I am doing fine so far.

I had heard years ago when I first started researching mold, mycotoxins, illness, etc. that many people had to stay on some kind of maintenance dose the rest of their lives and found it difficult to believe.  I am now a believer.  The downside to antifungals is that you need to monitor your liver.  So far everything seems to be fine with mine.

Why did my face feel like it was being pulled apart?

Valentine’s Day 2001 was anything but romantic. I had been on the IV for a few days and the antifungal drug and oral antibiotic for close to a week. I had gone to work as usual…..Shortly around noon, my throat began to feel restricted. I tried to wait it out. Finally I phoned Dr. D. He suggested that I go to the emergency room. I drove myself to the hospital, which, I realize now, was probably not the smartest thing to do.  While waiting to be seen, I phoned Sarah. I asked her to pick up her father as soon as he got in from school and to drive him to meet me at the hospital emergency room.

The constriction in my throat began to get worse and I was beginning to have tremors. My face felt like it was being pulled apart. The ER doctor came in. I told him—in between spasms in my throat and face—that I was having an allergic reaction to one or more of the medications that I was taking. He asked what medications I was taking and why I had an IV line…..

The ER doctor had the gall to tell me that my reactions were not typical of allergic reactions. I was just having an anxiety attack.

Later the next day while Sarah was visiting and helping me make soup, I began having problems again.  In my book I continue to write:

Some of the same symptoms began while we were working on the soup. My throat began to get tight and feel constricted. We phoned Dr. D, and he told me to come to his office. Unfortunately, he was not in his local office. Sarah drove me about six miles to see him at his other office.

By the time we reached Dr. D’s office, I was beginning to have tremors. He ordered an EKG and had my blood sugar tested. My EKG was normal, as was my blood sugar level.

The tremors and spasms in my face and neck continued to get worse. This time, however, I also began to have tremors on the right side of my body. My right hand and leg would shake. During the spasms in my neck, I had difficulty breathing. The doctor’s staff would ask me questions. I would not answer right away so they would ask them again. I had no control over my body. I had to wait for the tremors and spasms to stop to answer questions. It was if I were riding a wave. I would have a spasm and tremors and then it would stop, only to start up again within seconds. It was almost like a seizure.

I was so frightened, and I hated that my Sarah had to see me in this state. I didn’t want to die here, not like this!

Dr. D ordered an ambulance to take me to the hospital. The tremors and spasms were getting out of control and I needed to be in a hospital setting. I remember hearing his nurse asking if he wanted lights and sirens. He responded yes! He wanted the ambulance there as soon as possible. Hearing the urgency in his voice only made me more terrified.       

I became increasingly sicker and had a fourth sinus surgery while in the hospital and developed so many problems that we had to stop most of my medications to see what was causing what.  I was on an oral antifungal, oral antibiotic and IV antibiotic.   After all this, I thought the worst was over and my journey towards wellness would begin.  I had no idea what was to come.   The tremors and the pulling apart feeling in my face (as if someone was taking my skin and stretching it over facial bones that were too big for it) soon came to be a common occurrence when I reacted to chemicals and molds.

It is because of the skeptics like the doctor in the ER on my first visit and those who know I have been sick but not really known what I have gone through that I have written my book.  There are still so many out there who do not believe mold can make you chronically ill and that there is such a thing as multiple chemical sensitivity.   I hope to have the final edits soon so that I can get my cover photos done and submit it.       

Aspergillus Flavus

Shortly after my third sinus surgery on August 1, 2000 I received news that the culture from the surgery revealed Aspergillus Flavus.  I was placed on an antifungal.  There was still a possibility that I would have to start IV antibiotics for osteomyelitis (bone infection) in my sinuses again.  I had just had the PICC line for the last IV removed only six weeks before.  Everyone kept asking if I knew of anyone else like me and I didn’t.  After I started searching on the internet I found a group online through yahoo groups.  Not only did I find the site and a wonderful woman to communicate with who had the same fungal sinus condition, I found a great support system made up of wonderful and caring people who were suffering like I was.  To visit the aspergillus support group or the fungal infection trust:  www.aspergillus.org.uk/newpatients   www.fungalinfectiontrust.org

In my book I write:

The more I read, the more terrified I became.  Aspergillus is not something that just goes away on its own.  It is extremely difficult to get rid of.  There was more than one form of Aspergillosis.  ABPA (acute bronco pulmonary Aspergillosis) affects the lung.  There was also the Allergic Fungal Aspergillosis (allergy to Aspergillus) as well as a colonizing form of Aspergillosis (Aspergillus spores colonize in a particular area of the body).  The worst form was invasive Aspergillosis (In this form, the Aspergillus spores get into the blood stream).  The invasive form usually results in death.  Those were not words I needed to read especially in the depressed state I was in.

Every time I saw my ENT I asked, “Are you sure it isn’t invasive?”  Each time he reassured me that he did not think so.   I am on antifungals pretty much all the time because if I stop, a flare up results and the fungus takes off again in my sinuses making me very sick.  While I do have to deal with this, I thank God every day that it wasn’t the invasive form.

Osteo What?

I had my first sinus surgery in November 1999 shortly after the attempt at aspirating my sinuses failed.  By January I was still sick and and getting black mucous from my sinuses that my doctor suspected could be fungus.  A second surgery was performed in March 2000 to try and alleviate all the pain I was having.  I continued to be sick and in pain.  By April things had gotten horribly bad.  From my book:

…I received a devastating phone call from Dr. Spitzer.  The news was not good.  He had received the results of the bone scan.  The scan showed I had osteomyelitis (an infection of the sinus bone) and I would have to take antibiotics intravenously for six weeks.  He had scheduled for a home health nurse to come to my home that night and start and IV…..After several attempts by the home nurse to place a line in my hand, she gave up…the nurse phoned my doctor and I was told to come in at 7:45 a.m. and he would place the IV line and I could take my first dose there…

The schedule for taking this antibiotic (Primaxin) was exceedingly difficult on me.  Taking Primaxin is like taking a chemo drug.  The IV schedule was three times a day for six weeks.  I lost sleep because of having to get up early just to get the medicine out of the refrigerator so I could take it an hour later and going to bed late because of my night time treatment.  I lost my appetite and began losing weight.  Depression came on me like a big black cloud.  Eventually I had to cut my work schedule to half days because I was too tired and depressed to work a full day.  Here I had only been working less than a year and had taken time off work for two sinus surgeries and shortened my work days.  The guilt I had for leaving my co-workers in such a mess just deepened my depression.  Even then I was confident that I was going to get well and had no idea the ride I was in for.