I'm not sure where to start telling my story. I guess it would be by thanking my doctor who is not even from this country for saving my life, and shame on the rest as I have seen many over the years for not doing their jobs. I'm still quite bitter as this has taken away my life as I knew it, my career, time with my family, and sometimes my sanity. I started documenting my illness many years ago as I didn't know what I had but I knew it wasn't fibromyalgia. I will start from the beginning. I lived in a small farm community 60 miles west of Kenora Ontario. The only thing between Kenora and our town is a vast swamp.Did I mention I have never been to Kenora or Ontario in 20 years. In 1993 I lived on the farm,spent the winters cutting timber. I started getting pain in my lungs, I was told it was pluricy,given antibiotics and it would go away for awhile. Later that year I started suffering kidney pain,there was no no cause even though my right kidney just about ruptured. At this time I weighed 110 lbs and was solid muscle. In Novemver 1993 I had stabbing pain in my right lung(it wouldnt go away) Over the next few weeks the pain was in all my muscles.Sometimes the spasms were so bad you could see my muscles under my skin moving like worms.(no known cause) as I was always healthy. Within a few weeks my right lung colapsed 5 times(no known cause) the x-ray only showed pluricy(so it was thought). I had been at the hospital so many times in the previous 6 months, they just didn't want to see me. The last time my lung colapsed I was told in the ER to go home you have an appointment with the specialist tomorrow. I had to make my own way to the specialist office from the front doors of Health Science Center. At this time I weighed 85 lbs and looked like I was going to die. I couldnt make it and almost passed out,actually sitting on the floor in the hallway. I don't remember if I thanked the young girl, she was carring a ton of books. She put them on the floor and got a wheel chair and took me to the docs door. I saw the surgion and he couldnt understand why my lung and chest was so sore(it didnt make sence) I was admitted to the hospital for stand by surgury. Yes it is like stand by on a airplane as I waited 36 hours in the hallway to get into an operating room. I was so sick my family was called in as the doc didn't think I was strong enough to make it threw. Did I mention that I was blindly pumped full of antibiotics for weeks as blood tests showed no infection but they were willing to try anything. I also had vomitted up everything I ate and every medication that was pushed at me. In surgury they removed 10% of my lung as I had a weakness in the lining(no known cause). The surgion told me he burned several pustules off my lung(he had never seen anything like it) they were leaking air.I showed him the small blisters on my hands and he said they were the same.(this was never biopsied). He assured me if they shouldnt come back but if they did he would remove them again. My first memory of waking from surgury was screaming in pain standing on my bed. I had been given so much morphine(as I was also screaming in a semi-comatose state) they were in fear of over dosing me. There of course was no known cause for the pain in my chest and my right kidney was still failing. I heard the doc say,"I'm not sure why she's alive, she is tough. I was sent home within 10 days as they just didn't know what to do with me. My lung was fine but my chest was on fire(this lasted almost 3 years) the pain and spasms were in most of my muscles and the spasms would get severe randomly. These spasms could be so violent that I couldn't breath as they would crush my stomach and rib cage.(no known cause). Nothing made them better as I had tried over 60 drugs most of them made me vomit or had worse side effects. By this time I had been to many doctors. Finally my doc quitely said maybe she has fibromyalgia and gave me demoral so it would stay at home and leave him alone. I know he took alot of heat for giving me this drug long term but it was the only thing that didn't make me vomit. I still made many trips to the ER with severe muscle spasms, kidney problems. They would dope me up into a comatose state and send me packing. In 1998 I became pregnant and the pain subsided although i had several bouts of my kidney bleeding. In 2000 the pain came back with avengence and I couldnt tolerate demerol anymore. I was again sent to many doc,pain clinics,metabolic specialists no one could find the cause of my kidney problem,fatigue,or muscle pain and reaccuring spasms. Although they could seen the spasms were severe and I couldn't fake the kidney problems I was just sent to another doc or just sent away. I was sent to a pain consultant that put me on time release morphine as a last resort. He also could see the spasm but had no answers. Did I mention all the nice things that were said to me and within ear shot so I could hear. Oh, here she comes again,just get a shot and get her out of here. No one ever died from a muscle spasm. Heres a shot don't come back. She here looking for a fix, give it to her and get her out of here. On several occations I was carried into the hospital or brought by ambulance and this is how I was treated. I just wasn't treated. The story gets worse: In 2000 I was walking in flood water and again came in contact with blastomycosis. Although for years it had been roving my blood stream it now manifested on my skin. I didn't think much of the blisters I had from head to toe, as most of them went away. It was weeping and itchy but considering that I was walking in water up to my waist moving animals to high ground I ignored it. I was at the doc and he didn't seem to be concerned. After a few weeks most of it went away.(most of it) I was so tired from the flood I chalked the sick feeling I had to over doing it. The sores eventually healed and I thought they were gone. Several months later I started getting sick and the sores came back this time there were less but they were bigger and in the same place I had them before. I went to the doc and he gave me cream(which made them worse). But eventually they closed up after months. Only to reappear again and each time I was sicker the sores were bigger and I was having a hard time breathing. Being a paramedic I was careful to keep the sores free of infection and covered as it made them less painful. I found the only thing that gave me releaf was freezing them. Most of the time the sores would just weep but more often they would bleed and not stop. I would go to the emergency room and was treated with distain.(again not being treated at all) I didn't realize this because I was so phyically ill. This is when I over heard a doctor say, just ignore her and get her out of here, shes a drug addict that mutalates herself. This was a message that was passed from a doc at the disease control center. He inturn got a message from another doc that read: possible mutilation as her wounds are so clean.(funny how the original message got interperted) In all the time I had these sores no one did a culture and the biopsies were done in old sores. I was never given antibiotics for secondary infection, not even when I was hospitalized for 3 weeks to get the sores under control. While I was in the hospital only the nurses changed my bandages and I would not shower or use the bathroom without someone watching. I did this to prove I didn't do this to myself. Not to mention that I couldn't reach the sores on my spine and back. After 3 weeks the sores didn't get better but they were no worse so I was given the bandages and sent home. I spent 3-4 hours a day changing bandages.Although I had proven not to have done this to myself it seemed every doctor I saw was to lazy to actually find out what the problem was. In 2003 I was using 21- 4 x 4 bandages a day. I couldnt get out of bed I was so weak, I couldnt stand the sunlight and the pain was so bad I wanted to die. That is when I got a mushroom on my nose, its the only way I could describe it. Withing an hour it burst open and was spurting blood I couldn't control it. I had to go to the emergency room, I was treated with pure distain,again a doc from disease control center sent the message shes a nut and does this to herself.( It was made for me to hear the words) Another doctor came over and said to the attending, you had better take a good look because I have been watching her and there is something really wrong. She was told to shut up.At this time there was something sticking out of the bridge of my nose(a large parasite), the doc pulled on it and said it was stuck,but it was organic and didn't belong to me.He then told me my nose bone was broken and he wasn't sure what to do, he then left the room. The bleeding had stopped and I was told to leave and call back to the hospital after 8:00 a.m. when the chief of staff was in,my friend vidio taped the whole incident, including the phone conversation. I spent the next 6 months in bed and was now scared to go get help. I layed on my couch and had friends stay with me sometimes around the clock. I quit breathing twice, but there was no point going to the hospital. I saw several dermatologists,some of them thought it might be nerves. I took the pills they gave me the sores didn't get better but the pills made me sick. Then suddenly the sores healed again,some of these sores were open for 2 years. I was slowly recovering and one of my good hearted neighbors thought she could get me some help. Thats when I got a free trip to the phsyciatric center. Needless to say I was sent home, and also picked up a secondary infection because I was told to change my bandages in a public bathroom. Although I was again watched that I wasn't picking the sores. The nurses were told not to help me change bandages-although I would like to thank the one that was kind and changed the ones on my back, so I didn't have to use my hair brush to stick them on as I couldnt reach them. This time the original sores never closed up, I just stayed out of the sunlight as much as possible and tried not to get sicker. In 2004 again it got worse,at this time I saw a doctor that was local. The sores were so bad he wouldn't admit me into the hospital in fear that I would get septic shock.At this time I had a whole in the side of my nose and everything I drank came out my forehead. He started me on antibiotics and the sores and my pain improved over several months. He was furious at the way I had been treated or not treated, soon realizing that I was not doing this to myself.I Although the antibiotics (bacterial) stopped the secondary infection the sores remained open until 5 months ago this was also accompanied by severe muscle pain. As usual in the fall the sores again started to get worse. This is when I read about a boy in Winnipeg that suffered simular symptoms. The same week I happened to be at the vet and she mentioned I should go to a doctor in Kenora as it looked like Blastomycosis. I went home and did endless research and returned to the doctors office with research and pictures in hand. Pictures of other people with simular lesions. He agreed that everything else had been tried and immidiately gave me a perscription for ketoconazole. He was not willing to put me through more pain with a bone biopsy or wait for a culture. The first week I took the antibiotics I had violent muscle spasms(even in my sleep) but they were painless. Yes,the muscle pain over the next 3 weeks completely subsided. My doctor could hardly beleive it when I gave him the bottle of time release morphine. Over the next few weeks my kidneys would start bleeding and stopped(no known cause) but my kidney pain is now gone. I have had to go to the maximum dose of antibiotic in the last few weeks but the sores are almost gone. I am suffering some side effects from the antibiotics that are not so nice but I laugh when I tell people I feel a better level of shitty. I'm still on the mend and hoping that the blastomycosis will be cured with this treatment. I still cant touch my face where the sores are healing as it hurts to the bone, but they are shrinking. Last week the dentist told me my mouth is just about healed. Some of the sores went right through to the inside of my mouth and pallet. I just wonder how much of this could have been avoided if I would have been properly diagnosed in the first place.
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Topic: Blastomycosis: I got it in Manitoba (Read 1919 times)