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looking for people with same experiences
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2keepsmiling posted:
Hi, I decided to give this a shot. I was exposed to a toxin Feb 2, 2007, since then I now have asthma, allergies, RAD, have been coughing for seven years. Shut up in my house to avoid everything and everyone. Tried every medical and natural remedy for the coughing, nothing helps. Immune system is shot, two nervous breakdowns, but I am still smiling, most days. I am hyper sensitive to smells cannot take allergy shots.
Does anyone else have similar problems?????
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amcate responded:
I've had moderate to severe persistent asthma, similar to what you describe, but might not be as severe as your symptoms. I wasn't exposed to toxins. There are many people here with severe persistent asthma, many hospitalizations/intubations, doesn't respond to meds like it should.....though I don't know if it was from exposure to a toxin. You should find several people here with similar symptoms and severity.
 
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deluxehd responded:
2keepsmiling, sorry you are having health issues. I can relate all too well and hopefully what I have learned can help you. I was exposed to interior mold from a water damaged building in 2008. I developed severe persistent asthma, food sensitivities, chemical sensitivity, reactions to materials, medications, plastics, latex allergy etc. After seeing many doctors and homeopaths I was diagnosed in October 2013 with mold illness. It is not an allergy. I have 2 genes that make me susceptible to the illness when exposed to interior mold. It can affect all systems and organs in your body. It directly affects your immune system. http://www.survivingmold.com/diagnosis this link explains diagnosing. http://www.survivingmold.com/mold-symptoms this is a list of symptoms.
I started treatment in October 2013 and I have made remarkable improvement already.
I hope this helps and if you would like, please feel free to e-mail me: debneric@ptd.net .
 
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2keepsmiling replied to deluxehd's response:
Thank you so very much for replying to me, I do suffer similar ailments listed in the mold illness however it is all related to inhaling xylene and my hyper sensetive allergic reation to it.
Can you please tell me some coping techniques you used that I may not have tried, that have helped you through. Please email me at pvix1014@yahoo.com I tried to email you from my pc, not sure if it came through. Thank you so much.
 
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cwille responded:
hi, i know pretty much what you are going through, i was diagnosed with severe cough variant ashtma 5 years ago, i also was diagnosed with myasthenia gravis last year, ( it is a nueromuscular autoimmune disease) i too start to cough and can't seem to stop, i have been in the hospital 6 times already this year for an average of 5-7 days at a time, i had to take a disability from work , so i can't work anymore, i am only 47. oh i also have allergies, and i can't do allergie shots , i had a bad reaction to them had to do epi pen twice, i also did xolair shots and had a reaction to that, to top it all off i did the bronchial thermoplasty and that didn't work. I have tried all types of meds, with no results, at the moment i have a blood clot in my leg going from my ankle to my groin area, and i am also sensitive to smells. So i know how you feel. I really wish there was something i could tell you that works to help, the only thing i haven't done is the natural remedy stuff, i do feel for you, it is not easy, i can tell you that the only thing that seems to help with the coughing , not always , is morphine, i take it when i am real bad and can't stop coughing, it usually helps. I am also on pulmicort and iprotropium bromide in a nebulizer i mix it with lidocaine solution , that usually helps when the cough isn't so bad. I don't know what caused my problem, i was a jet engine mechanic in the military so i was around alot of toxins in the air, but i can't say for sure. I never had asthma as a kid. It's really wierd, i can't explain the cough and neither can my doc, i have been too two different clinics one in denver , the national jewish health resperitory , and the cleveland clinic in ft.lauderdale florida, they can't explain it either. So now i am pretty much in the same situation, afraid to go out or go anywhere, but i'll tell you i don't let it get to me, i still try to do whatever i can, you have to live. I know it's easy to say hard to do. I wish you all the best, i really wish there was something i could tell you, good luck
 
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amcate replied to cwille's response:
cwille, sorry to hear about the blood clot. It sounds like a big one. My guess is they probably have you on blood thinners. Has it affected your lungs? Has it gone into a pulmonary embolism? Anyway, just sending my thoughts your way. Hope you have peace.
 
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2keepsmiling replied to amcate's response:
Thank you very much, I am just hoping for others coping skills. I am basically confinded to my home because of this and I was wondering if anyone else had any ideas on how to occupy my time.
 
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2keepsmiling replied to cwille's response:
BINGO!! You have the exact same things I have!! My pulmonary specialist wanted me to go to Denver, but I could find no treatment that had worked on anyone with my same symptoms. You are the first! I have taken all of the meds have had all of the same things happens as you and more. I cannot take morphine or many other meds, like codeine for cough. Last resort is NyQuil. I have never drank, so it just knocks me out. I am 56 and have always been healthy and very fit and active. Now I am unable to do simple excercises because any increase in heart rate causes my coughing to start up. I tried to continue working for four years before I was deemed disabled by the state and the workmans comp doctors. I was devastated, and suffered a nervous breakdown. I talk to a therapist by phone once a week, I try not to go to the doctor at all. Really I just make it through each day. My kids, grand kids, parents and family live close, so I do have that. I miss the one on one with people. Thank you so much for letting me know I'm not alone.
 
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2keepsmiling replied to deluxehd's response:
Thank you for replying, I have had some great responses, I think I responded to yours but to another person by mistake. I am trying to keep it together and not lose my mind again. I am stuck in my home and running out of things to keep me occupied. No body close to me understands, that's why I am reaching out to this group. Thank you again.
 
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amcate replied to 2keepsmiling's response:
I'll normally do crafts or read to occupy my time, but everyone is different. There would be many in this group who feel others don't understand.
 
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cwille replied to amcate's response:
hey, thanks, no i was really lucky, we caught it just in time, yes the doc put me on xarolta, my leg swelled up big time scared me , and the doc sent me straight to get a sonigram on my leg. it's been about 3 weeks now the swelling went down but boy it still hurts sometimes. Thing is I ended up in the hospital for my asthma the same week, when it rains it pours. So as of today it's not to bad. I have to wear the funny looking socks lol and they are real tight. The doc seems to think i got it from a procedure i had with my bronchial thermoplasty called ivig, it was suppose to help with my myasthenia gravis. So we really don't know what caused it. Thanks for your thoughts.
 
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2keepsmiling replied to amcate's response:
Very true, I have one cousin that is disabled but not confined to her home, but she does understand a little. I live alone so that makes it harder. I keep in touch through Facebook. This is the first group I have joined where people are like me. I am very sorry for all of you out there, it is not an easy way to live. I will never give up hope or the willingness to look to the future.
 
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amcate replied to cwille's response:
No problem. I'm glad it didn't go into pulmonary embolism and is better. I know about the Ted hose, had them after my surgery....I don't like how they feel after awhile.
 
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amcate replied to 2keepsmiling's response:
This is a good group for understanding with more severe forms of asthma. It's a supportive environment...not too much internet fighting.
 
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2keepsmiling replied to amcate's response:
LOL, good to know. I have had my fill of fighting with doctors.


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