Category Archives: Worker’s Compensation

The Cost of Environmental Illness

Environmental Illness is costly not only emotionally to the person suffering through it and their family but it is monetarily costly as well.  In the beginning of my illness I was sent to an allergy and immunology specialist by my ENT, Dr. Spitzer.  Our insurance paid for the office visit but did not cover the EPD (enzyme potentiated) treatments.  These treatments consisted of two injections given every two months at a cost of $150.00.  My insurance did not cover the special B Vitamins I needed.  And it didn’t cover the special flours and other items I needed to bake my own breads, cookies, and crackers.  I had been told to avoid wheat, oats, barley, corn, and fermented products like soy sauce, catsup, vinegar, etc.  I began making trips to a health food store an hour from home to buy rice flour, tapioca flour, potato starch, garbanzo bean flour, carob products, guar gum (a stabilizer to replace gluten not found in these flours), and special rings to make my hamburger buns.

Fast forward a bit and I need to take a nebulized antifungal.  My insurance would pay for the nebulizer  ($150) but not the compounded antifungal for the nebulizer ($1200.).  Fortunately, I was put into a a trial that allowed me to buy the antifungal for $300.00 I believe.

Before long I was being sent to Dallas for the first of what would be several trips. I had filed for workers’ compensation but who knew what the outcome would be and if these new expenses would be covered.  My first trip included the cost of airfare for both my husband and I from California to Dallas.  It cost us over $400 to rent a car at the airport for the week my husband would be there (we learned that it would have been cheaper to rent a car outside of the airport).  There was the expense of my husband making a second round trip by air to visit me when my stay was to be extended longer than we had planned.  The cost of my room was $1100 per month for a two-bedroom environmentally safe apartment if I shared it with a roommate.  My stay was nearly four months.  None of these expenses were covered by insurance.  I had to buy organic food and unusual foods for testing when I was rapidly losing foods that I normally ate.  A loaf of yeast-free bread made of water chestnut flour was $7.00.  A water chestnut flour bagel was $3.00.  My bottled water was over $1.00 per bottle. I had to have special shampoos and soaps as well.  Again these were not covered by insurance.  My treatments had to be paid up front and then submitted for reimbursement by my insurance.  Each item I did skin testing on cost me $23.  I can’t even begin to tell you how many items I tested just to find safe foods and that was before I tested molds, pollens, and other inhalants.  I was doing two IV therapies a week at $125 per IV.  I was doing daily sauna therapy that was $35 per session.  I was doing oxygen therapy.  I was going through numerous labs and tests that were also very expensive.  Weekly I would pull out a credit card one that still had room to charge on it), pay the weekly bill, then spend the weekend putting it all together to mail to my insurance.  They paid a percentage of those bills.

I returned home from Dallas with antigens that I needed to take daily (I rotated them using a four-day rotation) and these items were expensive as well.  After having a urine Tricothecene test, I learned that I was continually being made more ill by the mycotoxins on my clothing that had been contaminated from work.  I had  to give away my clothes and start over because the cross contamination of mold and mycotoxins would continue to make me ill.  My mother came over and bagged up all my things.  You can see pictures of this in my blog post, Environmental Illness – Not for the Faint of Heart.  I also purchased a sauna for $3,500.00 that was not covered by insurance but was needed to continue my detox regimen at home.

I bought only a few clothing items because I could not afford to replace my entire wardrobe.

Dr. Rea from the Environmental Health Center – Dallas issued a letter that included a rough estimate of costs that I would incur as a result of my mold exposure to be used in court.  I will include more from that list and other expenses during Part 2.

Thank You

I have noticed today that I have several new followers to this blog.  I would like to take a moment to welcome you and say thank you.  Please feel free to comment on blog posts and ask questions. 

You will see that I have a great group of followers who are amazingly helpful as well.

To all of you, both new and long-time followers, I say thank you for wanting to learn more about my story and environmental and chronic illness.  Your support and encouragement mean a lot to me.

Part 2 of My Book Blog Interview with Amy

Today Amy at adventuresofanallergicfoodie will be sharing Part 2 of her interview with me as part of my book Blog Tour for Allergic to Life.  Please stop by her blog and continuing reading the interview.  I am very appreciative of all the support she has given me.

Catch Up Mondays: Mycotoxins – revisited

This was first posted on August 23, 2012.  I still find that many understand what a mold spore is but have no idea what mycotoxins are and how dangerous they are to the body.  When I met with a traditional allergist almost a year ago he didn’t want to believe me about the molds, mycotoxins, and my illness or sensitivities.  One of the questions he asked was, “Do you even know what a mycotoxin is?”.  Of course as soon as I began saying what it was, he didn’t want to hear it.

When I first became ill and we realized that I was being exposed to mold and had an allergy as well, I thought ok so that is what is making me so sick.  I had no idea about molds and their byproduct, mycotoxins.  I learned that yes the mold can make you sick and cause allergic reactions but the mycotoxins are even worse.

Molds produce mycotoxins which are poisonous to our bodies, can cause multiple illnesses and death. In September 2002 I had my lymphocyte panel checked again.  My numbers were not good.  The mold mycotoxins were still very much attacking my body.  A urine Tricothecene test was ordered to determine what my level was.    The test revealed that my level was an 8.  The best being 0-1 and the worst being 18.  I was diagnosed as having mycotoxicosis referring to the poisoning from exposure to mycotoxins.  The mycotoxins can potentially cause acute and chronic health effects including weakened immune systems  from ingestion, skin contact and inhalation.

Two years later while on a return visit to the Environmental Health Center-Dallas, Dr. Rea told me about another test for mycotoxins using DNA testing on mucous and or tissue samples.  I became ill with a sinus infection while there and we collected mucous from the sinus and had it tested.  The machine detects DNA of molds and mycotoxins.  We were checking for Tricothecene since that was high in my urine.  The lowest detectable level of the machine is .02 ppb.  The level in my sinuses was quite high at 11.54 ppb.  Dr. Rea then suggested that I speak with the doctor doing this test about checking tissue of my ovaries taken during my hysterectomy in 2003.

As soon as I returned home I contacted the hospital in Dallas and requested that samples be sent to the Environmental Health Center for testing.  The report I got back was unbelievable.  The level of mycotoxins in my ovary was 125 ppb.  The sample had to be diluted because there was so much the machine couldn’t count it.  No wonder I was sick.  No wonder the count went down right after the hysterectomy and I became so sick from ridding my body too quickly of the mycotoxins.

Since that time my urine Tricothecene level has bounced back and forth.  It seems to be higher when my fungal sinus infections are bad because the fungus has taken over my sinuses.  The Tricothecenes are stuck in my cells (kind of like velcro is how it was explained to me) and periodically I am able to release them.

There are many different mycotoxins produced by different species of molds.

Valentine’s Day

Happy Valentine's Day

Happy Valentine’s Day

Today is Valentine’s Day.  Are we going anywhere special?  Are we eating any special dinner?  Today is Day 1 of the three critical days surrounding my LDA (low dose antigen therapy).  I am in isolation for the next three days and will continue to stay so for a few more days to make sure I don’t get any exposures.  What am I having for dinner?  LAMB STEW.  The same lamb stew I will have had for lunch.  The same lamb stew I will have for lunch and dinner tomorrow and the next day.  The only change is when I have a ground lamb patty with potatoes cooked in rendered lamb fat for breakfast.  See my LDA Day 1 from ????

Over the years as I have become sicker, less tolerant of chemicals and indoor enviroments and more allergic to foods,  Valentine’s Day has been celebrated less.  As I was thinking about today’s post I remembered a few Valentine’s Days that were anything but romantic.  I am including a few excerpts from my book.

2001

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. Rick and I had made no definite plans on how we would spend the evening because I had been sos tired, and we were not sure if I would feel up to anything at the end of the day. 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 probablly not the smartest thing to do…..I was released and went home around 2:00 a.m. on Thursday.

2003

Valentine’s Day  was very hard for me. I celebrated without my valentine.  I was in Dallas, and Rick was home in California.  I couldn’t even walk across the alley to the store and buy him a card.  I always bought special things for him, Sarah, and Laura.  I realized that they were just “things” but it was something I looked forward to doing.

The pain in my left eye and sinus area was becoming worse.  I was so hungry from fasting.  “Normal” people were going out to dinner to celebrate and eating fancy desserts and chocolates, and all I had was getting was a lousy glass of water…

2004

On February 11, 2004 (a few days before Valentine’s Day) I wrote in my journal, “I hat this aspect of my life.  It causes paranoia.  I am so afraid of reinfecting myself that I wonder:  even if the allergies get more manageable, will I be able to go out anyway…… and a few days after Valentines Day I was preparing for a much dreaded defense medical appointment

2006

I received notice late in December that my trial would begin soon.  The first session was scheduled for February 7, 2006 (exactly a week before Valentine’s Day).

Ground Hog’s Day

I know that I am a little early for celebrating Ground Hog’s Day but I had a repeating dream last night. I was not in a deep sleep because after the dream repeated itself I realized that I was aware of the dream and could think about it.  I began thinking about the dream and trying to analyze it.   I immediately thought of the movie Ground Hog’s Day because the dream would repeat itself over and over as if it were a recorded loop. After a while I decided that I had to get up and write things down if I was ever going to release myself from the grip of this dream and actually sleep. At 2:30 this morning I got up. I grabbed something to eat, made something warm to drink and sat in bed with my steno pad.

It was the kind of dream where you wake up and wonder where you are. How did you get there? What happened to the time that you are missing in your mind? I often find myself wondering where the time went. One day I am a forty-four year old woman and the next I am fifty-eight years old. I spent so much time and energy fighting constant illnesses and infections, battling allergies and sensitivities, going through surgeries, living in isolation, fighting for validation in court, and fighting for my life, that it is hard to grasp where the time went. It is as if I went to sleep young and healthy and woke up old, sick and gray. There are no major events or excursions that one might have to mark the passage of over ten years. Yes, my daughters graduated from college, one got married and grandchildren were born. Yes, I had birthdays and anniversaries but these birthdays and anniversaries weren’t really celebrated in a way that would leave a positive impression.  There were no big parties to celebrate a milestone birthday or anniversary.  I didn’t go on any big trips across country or to Europe.

This dream may have been precipitated by a book I am reading, Before I Go to Sleep: A novel. In this book the main character has had an injury that allows her to retain memory as long as she is awake but once she goes to sleep those memories are gone and she wakes to find herself in a strange place and in a body that is older than she remembers.  I can sympathize with the character in this novel.  There are days when I look in the mirror and wonder who the person looking back at me is.

The loss of time topic, so to speak, is a conversation I have had with others who suffer from Multiple Chemical Sensitivity and other Invisible and Chronic Illnesses.  We all share the same sense of loss of time.  When asked how old I am, I have to think because it is hard to fathom that time went on without me fully participating in a “normal” life.

I don’t sit and bemoan this any more, but I did.  It used to fill a lot of my waking hours.  There are times as in last night’s dream that these questions haunt me.  I realize that things happened during that time.  I lived through it but there are a lot of painful and scary moments during that time that may act as a sort of amnesia and thereby leaving me with a sense of time lost.

With any luck after sitting up this morning writing in my steno pad and typing it here, that sense of loss will be gone and the woman in the mirror will feel more familiar and less a stranger.

Millions of people who suffer from chronic illness will soon be subject to diagnosis as mentally ill.

Based on the DSM-5  (Diagnostic and Statistical Manual of Mental Disorders) I would fall under the category of mentally ill and given the diagnosis of having a Somatic Symptom Disorder for my constant vigilance regarding my health and keeping myself symptom free.  Author Toni Bernhard (How to Be Sick) wrote about this new label in an article written for Psychology Today.  This same topic was covered in a post from the blog, Life as we know it (links to both are shown at the bottom of this post.

I wonder how many of you or those you know would fit into this category.  I had a workers’ compensation doctor state that I had a somatoform disorder (the same one I wrote about that said I should have doctors come to me and then somehow leave it out of his report) and fortunately for me the judge didn’t agree with his report.  I am fortunate that my doctors have seen me from the beginning of my illness through to the present and have seen my reactions and know that what I do is necessary.  However, what if I suddenly had to see another doctor and discuss all that I do to be safe and have a semblance of life?  Would this doctor believe me?  Would he say that I have a Somatic Symptom Disorder and then prescribe drugs?

This is just wrong on so many levels.  I want to know what you think after you read about this.

http://www.psychologytoday.com/blog/turning-straw-gold/201301/your-physical-illness-may-now-be-labeled-mental-disorder
http://cfs-facts.blogspot.com/2013/01/dsm-5-somatic-symptom-disorder.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+blogspot%2FxkdoO+%28Life+as+we+know+it%29&utm_content=Yahoo%21+Mail

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.

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.

 

Bring on the probiotics!

Well today I saw my ENT.  This wonderful doctor has been treating me since the beginning of my ordeal.  He put me on thyroid medication despite my levels being in the normal range because nothing else was getting rid of the swelling and as he said, “How do we know that this number is your normal?” He is the only doctor who offered to give me the IV’s I need to help fight all that goes on in my body.  He is the only one who knows that I am not the “normal” patient and thus does not treat me like a “normal” patient.

And today despite knowing that antibiotics are not good for me or that I only have one truly safe one that I don’t react to, he truly felt that I needed to take one.  The only antibiotic that I haven’t reacted to is Omnicef.  It has been quite some time since I have needed one but here I am taking it.  Soooo – bring on the probiotics.  I don’t dare take this medication without plenty of probiotics even though I am on an antifungal.

I respect my doctor because he does not prescribe medications unless he feels there are no other options.  I have tried the silver, I have tried grapefruit seed extract and I irrigate.  I have immotile cillia and sometimes no matter how much I irrigate the infection just begins and takes over.  The mold exposure and fungal infection has left my sinuses very vulnerable.  My face feels like it has been hit by a MAC truck.  The trigeminal neuralgia on the left side of my face was so bad yesterday (and helped with acupuncture to reduce the severity) but still I had pain in my ear.  The magnesium, glutathione and Vitamin C IV helped with the neuralgia but my maxillary sinuses still hurt.

Dr. Spitzer (have permission to use his name in my book so I feel free to use it here) thank you for being my doctor and not ever for one minute thinking I am crazy and for thinking and working “outside the box” in treating me.  And thank you for fighting so hard for me in my battle to prove my work injury and fighting for me with the insurance carriers.