Catch-Up Mondays: I just want a new nose – revisited

I originally posted this on April 7, 2013.  My sinuses have been one of my biggest nightmares since the mold first decided to take up housekeeping in them.  Surprising (knock on wood) after all the exposures I received while being with my dad my sinuses have remained healthy while the rest of my body is still protesting.

Ok – we all at some point we all wish we could change something about ourselves.  I have never really considered changing my nose although it isn’t a perfect nose.

I am not talking about wanting a new nose because of the way mine looks.  I am talking about exchanging it for a healthy nose, one that didn’t get invaded by aspergillus from my sick building at work and one that doesn’t get infected more often than I would like.  While I am grateful the infections are no longer defined as osteomyelitis (bone infection) requiring IV antibiotics, they are painful and frustrating none the less.

At one point I joked about getting a silver nose like the villain in the movie Cat Ballou.  Thinking, mold couldn’t grow in the silver.

Or maybe I could exchange my nose for one of these below.  They are all nice looking noses if they didn’t come infected with mold.

Or maybe I would try to see about getting Elmo’s nose.

A friend back in the beginning used to joke with me about how to get rid of the fungal infection.  Her husband was an AG teacher and they also lived on a ranch.  She told me she would just go and get some Dursban and pour it into my sinuses.  Of course we were just joking and whenever I complained about my sinuses she would offer to run and get some and then start laughing.  Can you imagine putting that in your sinuses?  Not me.

What body part would you like new but not for cosmetic reasons?   If I chose cosmetic reasons, I would be changing out a lot of parts.

Sinus Health

As most of you know from following along here with me that I have major sinus issues. It all started when I was exposed to mold in my work place and then it decided to set up housekeeping in my sinuses, my left sinus in particular. I was instructed to irrigate my sinuses daily and up to four times a day when fighting an infection or allergens. I have irrigated always with salt water but at times have also added baking soda, betadine or silver. Sometimes upping the amount of irrigating helps keep an infection away and sometimes it doesn’t.

I have had numerous sinus surgeries but thankfully nothing since 2003. I take antifungals as well to keep the fungus in check.

 There is a simple saline nasal spray that some have used to keep their sinuses clear and help with swelling and inflammation.

 Some swear by their Neti pots.

Then there is this contraption.

What my doctor recommended, however, is the Grossan Sinus Irrigating system.  I have immotile cilia most likely from all the infections.  What I like about my Grossan system is that there is a pulse to the water similar to a Waterpik.  I can adjust the flow and pulse of the water entering my sinuses thereby getting more of the mucous to come out of my sinuses.  This is the system I now use.  I also now buy Saline Solution from the pharmacy rather than having to mix my own.

My Sinus Irrigating System

Sinus Nebulizer

My Nasoneb Sinus Nebulizer

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.

How to tell a sinus infection is gone.

This search question showed up this week. For some, just feeling better and having no more pain and symptoms will signal that a sinus infection is gone. For others, and this has happened to me, a sinus culture is required to make sure there are no more detectable bacteria left. I have finished an antibiotic thinking I might be better, days later feel horrible again, only to find that the infection we were treating was gone but a new one had emerged in its wake. It is possible that the first culture only showed one bacteria because it was the most prevalent and once it was gone the other became detected. The antibiotic may have only worked on the first bacteria and allowed the other one to continue growing. My advice is that if you are not sure if the infection is gone to have a sinus culture done to detect any bacteria and to have a sensitivity test done to see what antibiotic will kill off the bacteria present.

I hate antibiotics but with the horrible ordeal my sinuses have been through between strange bacteria that my ENT has never heard of before and the fungal infection, I have had my share of them. We are as cautious as we can be when deciding treatment. Sometimes a good cleaning of my sinus passages and copious amounts of saline irrigating can stop the infection from becoming so rampant that I have no choice but to take an antibiotic. The trick for me is to catch it as early as possible. I also have to remember that if an antibiotic is taken, I need a probiotic.

Nothing was working!

I had endured three sinus surgeries and had just had my fourth on June 12, 2001.  In the time of about twenty months I had gone through four sinus surgeries and was still dealing with pain and constant infections.  The fourth surgery was from a doctor in Southern California.  As with most of my doctors I communicated a lot via fax messages.  It was easier for me to get my words, questions, and frustrations out on paper.  I didn’t have to rely on the doctor being available and he could simply reply with a fax or a phone call at his convenience.

On June 25, 2001 I faxed my newest doctor.  (Excerpt from my book)

I am still running the fever and have pain, particularly in the left sinus area.  I am trying to get a handle on what is causing this as quickly as I can.  I take a pain pill a half hour before I go to bed so that I can sleep and wake up hurting so bad that I take pain pill so that I can function.  I am due to return to work Aug. 1 after being on leave of absence since March.  I still can’t believe it has been almost two years since I first got sick.  I feel like I am not any closer to a solution than I was back then. I am frustrated that I don’t seem to respond to the surgeries, IV therapies, and other treatments I have endured. Every time we think we have the answer, it doesn’t work, or I become ill again a short time later.  Maybe I need a total body scan.  If Dr. D—-agrees to the bone scan, I have listed the hospitals that I could go to….

On June 27th I wrote another lengthy note and faxed it as well.  I had enumerated 10 things.  From my book I list a few of those things.

3. I had an infectious disease doctor recommend Amphotericin through IV…My allergist isn’t too sure about it.  I am ready for the ‘Big Guns’ at this point…5. I am at the ‘BREAKING POINT!’  Thank GOD for the Remeron…9. I need assurances that things are going to get better.  Nobody can really understand what this has been like unless they have lived it….10. HELP! HELP! HELP!

When I said I was ready for the ‘Big Guns’, I meant that I was willing to risk everything and try the Amphotericin-B (what doctors referred to Ampho-Terrible).  It was such a bad drug and had to be administered and monitored in the hospital.  Fortunately for me, I never had to take it through an IV.  I also mentioned Remeron in my second fax to the doctor.  Remeron is an anti-depressant that my doctor had put me on almost a year earlier when I was having such a difficult time dealing with all the illnesses that kept bombarding my poor body.

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.

 

 

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.

How do you know if a sinus infection is osteomyelitis?

I have had osteomyelitis in the sinus on more than one occasion   The pain was so intense and the typical antibiotics were not making me well.  My ENT consulted a colleague who suggested that I have a Gallium Scan.  The colleague thought that I might have osteomyelitis (an infection in the bone).  This was my ENT’s first encounter with someone who possibly could have osteomyelitis.  I was directed to the x-ray department of our local hospital to have the test done.

A Gallium Scan is a test using radioactive material called gallium to look for swelling, infection or cancer in the body.  The scan is a type of nuclear medical exam.  

I arrived at the lab and was injected with  radioactive gallium into a vein in my arm.  I was told that the gallium would travel through my blood stream and if I had a bone infection it would collect in the bone.  I was instructed to go home and come back a few hours later to allow the gallium time to travel through the blood stream.  When I returned to the lab I was placed on a table and was instructed to lie still while a special camera able to detect gallium would see whether it had gathered in my sinuses.  The test took me about thirty minutes.  The result was that I did, indeed, have a bone infection in my sinuses.  The treatment was six weeks of IV antibiotics.

After six weeks of IV therapy I was once again sent to the lab.  The best way to determine if the infection was gone was to have a White Blood Cell Scan.  Again,  radioactive material was used. My blood was drawn and the white blood cells were isolated and tagged radioactively and re-injected into my arm.  A scan was done a day later to see if the radioactively tagged white blood cells settled in the sinuses.  While the test showed I was over the infection, I was uncertain because I still did not feel great and that little voice in my head said the battle wasn’t over.  I was so right!

The question of how you know if a sinus infection is osteomyelitis was a search question.  I think the Gallium Scan is probably the most definitive test from what I have read and is the test my doctor used.  CT Scans and MRI’s can be ordered but may not show the entire picture.  I would love to show you a picture of a Gallium Scan but don’t want to risk copyright infringement.  Just imagine a typical x-ray with a bright yellow glow.  The bright yellow glow is the radioactive gallium that pooled in my sinuses.

This is my experience with detecting whether or not my sinus infection was a typical infection or osteomyelitis of the sinus.  Only a medical practioner can make the determination of whether or not someone has osteomyelitis based on symptoms and tests that he or she chooses to prescribe.

I am Teasing

While preparing my manuscript, photos, etc. for submission to the publisher, I was asked for additional information:  about the author, about the book, and a 1000 maximum word “teaser”.  I am including a portion of that teaser in my blog today.  It was one of many scary adventures I have had since becoming sick and so sensitive to everything.  Do you think this would entice someone to want to find out more?

That afternoon I could start my treatment using the new IV site and the pump. I began my IV in the kitchen as usual and went into the living room to place the medication bag in the fanny pack that I had received the day before. I was beginning to put the medication bag in the fanny pack when I became very dizzy and decided to read the medication sheet to see if this was a side effect of the medication. Staggering into the kitchen with my medication and fanny pack, I frantically tried to read the data sheet.

By the time I reached the kitchen my vision was going and I could not read the paper. I knew that things were not right, and I hurriedly tried to reach the phone to call for help. As I started back into the living room, I began having difficulty walking. The IV bag dropped from my hands and dragged along the floor as I tried to get to the phone.

The phone was on the table near the sofa. I lost my balance and fell onto the glass coffee table and then landed on the floor between the sofa and the table. I tried to pick up the phone but I had no control over my arm. As hard as I tried, I could not get my arm to move for the phone.

Minutes seemed like hours. I cried and prayed. An eternity seemed to pass before I managed to get the phone in my hand, but it was no use to me if I had lost my vision and could not see the keypad. I tried frantically to just push buttons in hopes of at least getting the operator but nothing happened.

My fear began to grow. I was home alone and I could not get help. Rick had left for a doctor appointment as I was starting to prepare the IV. He would not be home for a while. I could not yell for help because no one would hear me, and at this point I kept going in and out of consciousness. I was so sure that Rick was going to arrive home from his appointment at the doctor to find me dead. I blacked out for a couple of minutes and then managed to find 9 on the keypad. I worked my fingers up and across until I was able to punch the 1 key.

Hopeful that I had punched the right keys, I waited for an answer at the other end. Then there was a voice. I made it through to 911. I spoke with the dispatcher and explained my situation. I told her that I was having an allergic reaction to medication and needed help. The dispatcher assured me that an ambulance was on the way.

Still ill after second operation for sinusitis

Hello Everyone

I check to see what search engine terms are used to draw visitors to my blog.  When I see one like the title in this post, I just want to be able to tell the person right then and there my story and be able to offer consolation.  I have decided that periodically I will take some of these search terms and write about my experience.

I began getting sick in August of 1999.  I had the first sinus surgery in November of that same year followed a few months later in March of 2000 with surgery number two.  We still had not been able to prove what was causing the severe pain and constant infections I was getting even though by then I was getting black string-like fibers coming out in my sinus discharge.  This was followed a month later by six weeks of IV therapy for a bone infection in the sinuses.  When I responded to the IV and my White Blood Scan came back good, the IV was discontinued.  A White Blood Scan requires drawing blood, tagging the white blood cells radioactively, re-injecting them and waiting to see if any of these radioactive cells return to the sinuses signalling that the infection is still present.

As with the way my life was going, I became ill a few weeks after discontinuing the IV and had sinus surgery number three on August 1, 2000.  During this surgery we discovered that I indeed had a fungal infection.

Treatment for the fungal infection began and over the next three years I had three more surgeries.

While I still have to irrigate my sinuses daily, deal with infections that come at me from nowhere (especially when the fungus gets active), I have not required a sinus surgery for nearly ten years now and haven’t had the need for IV antibiotics.

I think the person searching for help most likely has an undiagnosed fungal infection if the second surgery hasn’t helped.  Just wish I could have told him/her to have cultures taken.  It sometimes takes more than one culture because fungi don’t like to grow outside their nice little environments.

For those of you viewing for the first time, feel free to leave a comment and please sign up to follow me.  If the person had left a comment, I would have replied to the comment.  There is a lot to my story and that is why I have chosen to write my book which I hope to get printed in the next few months.