Hello all. I need your help. I am 23 years old and the doctors have no clue whats wrong with me. My lungs have collapsed twice, my ribs have broken twice (from all of the coughing), I've been on prednisone for 3 years. It started out with bronchitis. Then when I didn't get any better really, since the cough still remained (and it was even worse at night), they sent me to a pulmonoligist. He said it was sinunsitis and allergy induced asthma. So, we had to treat the sinuses first before I could do allergy shots. I had sinus surgery --most uncomfortable. Then I was treated with a round of antibiotics, singulair, nasonex, advair, albuteral, and I can't remember what else. Then 2 months after the surgery, I was in the hospital for collapsed lungs. I was refered to U of Michigan. They did a broncoscopy and every blood test imaginable. Then they did a lung biopsy -- also the worst. They sent samples out to all the top places who all disagreed with each other. Some said bronchiolitis (scarring of the lung tissue), others said just plain asthma. The other weird thing was that my IGE level was elevated to 650, where it should be between 30-40. So, I guess my body was attacking itself. They put me on the injection Xolair (three injections every other week) and began giving me Allergy shots, and I was still on the darn steroids. At this point, I have scars all over my body from the drug, the moon face, and 60 pounds of weight gain in 3 years.
When I wasn't able to get off the steroids, they thought maybe this wasn't the treatment for me. U of Michigan said they were stumped and didn't know what else to do. Now, I'm in Chicago and my new doc says that at least some of my problem is Sinusitis. He thinks that the first surgery might not have worked.
So...my question to the forum....anyone out there with a similar experience??? Anyone have sinusitis that was so bad their lungs collapsed from it? Does anyone have any suggestions on the post-nasal-drip? I can hardly remember what its like NOT to have snot running down the back of my throat. The Nasonex only works so much to control it. Are there certain foods I could eat?
But mainly, I just want to see if there is anyone out there who has had asthma or sinusitis so badly that they were on steroids for more than 3 years...had several surgeries....anything that might be similar to me. I'm DESPERATE to talk to someone who has been through it.
The most frustrating part (besides the steroids) is that I was a healthy kid. No allergies. No asthma. Never had an ear infection or strep throat. I was an athlete. I'd only had colds and the flu, and not very often. Then when I was 20, I caught bronchitis. Then ALL OF A SUDDEN, I've got asthma and a whole host of outdoor allergies. It just seems crazy to me.
Anyone else asthma free until their 20s or 30s or 40s? It just seems like eveyone I talk to had asthma since they were little. No one in my family has asthma, and the only allergies anyone has are to cats and dogs. PLEASE, PLEASE...HELP! I want to get off the blasted steroids. At this point, I don't even care if I have to be on 30 pills and injections a day. As long as I'm not on the steroids. If I'm not on the steroids, then I feel like I'm healthy.
I feel helpless for what to suggest to you and as you can see, most of the others felt the same way.
I developed many of my allergies as an adult. Have you changed environments? When I moved from Wis. to Tex. I found that I now have allergies to the juniper bush (cedar fever) which I never had been around before and I was told that it took between 2 to 5 years of exposure to this and that allergies would normally begin. I've seen this in many people.
You mention Michigan and Chicago...that thought brings to mind, roaches! One of the absolute biggest allergy offenders known!!
Have you ever smoked?? If you do, good advice~Stop!
You are so young for all of this, but I have seen my 16 year old very ill as well. She tends to get colds, that turn into bronchitis and then asthma.
When you cough, ribs can get easily broken, especially with steroid use. It has been noted that the use of steroids can also cause osteoporosis/bone thinning after 3 years.
Your immune system sort of turns on itself and that's why you need the help of antihistamines with allergies.
I developed many of my allergies as an adult. Have you changed environments? When I moved from Wis. to Tex. I found that I now have allergies to the juniper bush (cedar fever) which I never had been around before and I was told that it took between 2 to 5 years of exposure to this and that allergies would normally begin. I've seen this in many people.
You mention Michigan and Chicago...that thought brings to mind, roaches! One of the absolute biggest allergy offenders known!!
Have you ever smoked?? If you do, good advice~Stop!
You are so young for all of this, but I have seen my 16 year old very ill as well. She tends to get colds, that turn into bronchitis and then asthma.
When you cough, ribs can get easily broken, especially with steroid use. It has been noted that the use of steroids can also cause osteoporosis/bone thinning after 3 years.
Your immune system sort of turns on itself and that's why you need the help of antihistamines with allergies.
Hi Meegs,
I'm brynn and I moderate some other, mostly unrelated forums here at HW. I'm just here on this board for a moment, looking for a certain post which a member asked me to read (long story). But I saw this thread and thought I'd add some comments. I certainly can understand how you want to get off the steroids. There is something ringing a bell for me, upon reading your symptoms, but I can't put my finger on it...
...probably because I have almost no experience with these things, meaning lung and sinus problems (except for my mom died of copd). But I have a great deal of experience with serious illness that can be neither diagnosed or treated adequately, in general. You don't mention what you think about any of the partial or temporary diagnosises which have been made along the way, or about any of the attempted treatments -- other than hating the steroids and maybe feeling fearful and definitely frustrated. What I mean is, it doesn't sound like you have taken the lead in directing (what I like to call) your medical team. It sounds like you are not the captain of your team.
And that, I don't mean to sound corny, or accusatory. I live with chronic pain, the cause of which has not, and cannot by available medical technology, be identified. It started when I was a teenager, only mild pain which I could keep completely under control with exercise. But it became gradually worse, until 20 years later, it was so bad that I could no longer work, and I was forced to file for disability. That was 12 years ago, and 6 years ago I finally got treatment! Yep, all that time I was in pain, but the deal with pain, is that if Drs don't know what's causing it, they 1 - aren't going to treat it, and 2 - are going to tell you it's all in your head. (although to some extent that's true of all illness/conditions) Plus I have a lot of seemingly unrelated symptoms, which further led Drs to believe the symptoms weren't real. And if I hadn't taken charge of the situation, well, I would have ended my life years ago ;-)
So here's what I mean by becoming the captain or leader of my team. I look at all my current Drs -- primary care (PC) plus all the specialists, physical therapist, psychotherapist, maybe certain nurses, physician assistants and MYSELF -- as a team. A team put together for the only purpose of making me better, and I'm the captain or leader. And I was more or less forced into the position. Like you, I had been through the mill with the medical community, doing whatever I was told, believing whatever the Drs would tell me (even that it was my fault) and hoping against hope the next Dr would know what to do. But I eventually became suicidal, with my fate held completely in the hands of professionals who clearly couldn't care less. So I had to put my fate in MY hands, where it belongs. I had to learn to be assertive!
First I started learning as much as I could learn about my symptoms, what they mean together and what they mean individually, about whatever partial or temporary diagnosis Drs had suggested, and about whatever *I* could figure out MIGHT be the right diagnosis, based on whatever I could learn. Personally, I kind of take this to the extreme, because I tend to be a bit of a science nerd, and actually enjoy reading medical articles about research and stuff. But one can still learn a lot for themselves just by reading non-technical articles (the health article in popular magazines and newspapter) as well as books (you can usually find books about certain illnesses in bookstores), and of course, the internet.
Then I had to learn how to be heard by my Drs. If they brushed me off (which as soon as I started to not go along with them without question, they kicked up the brushing-off by another notch), I had to find the courage to ask them to do whatever I had asked anyway -- a diagnostic test or scan, and experiment with a certain medication, whatever. If it was something I had read about which other people with my symptoms had been successful with, I had to try it!
And I tell ya', it's been a long, rough road. But 6 years ago, I finally hit my stride. I finally realized that every treatment decision I let a Dr make, by him/herself, fails. And not EVERY decision we make together is successful, but many are. And every decision I allow a Dr to make alone, does definitely fail. And the reason is that I know my body better than any Dr can, and how it works. Drs may know how human bodies are "supposed" to work, and when someone has a known illness, which can be definitively diagnosed and treated, I'm willing to turn them loose and let them do their thing. But when we have problems which cannot be accurately diagnosed, all Drs can do is guess, and without that intimate knowledge we possess, as residents inside our own body, their efforts are destined to fail. There is something about our experience of knowing how our bodies act and react, which makes us eminently qualified to have the last word on treatment. And just to be clear, I'm speaking of cases where an illness or condition can't be diagnosed -- a lot like yours!
Ok then, I'm starting to get carried away. The only concrete suggestion I could make, is to take an antihistamine 24/7. I don't know, maybe the Nasonex you're taking contains an antihistamine. But if not, it will definitely help with that dripping. My main point is that maybe it's time to take some control over your medical treatment. Learn as much as you can about your symptoms, and pay attention to what your body is telling you! And this is a good start, posting messages where other people might know something more about it. As I said at first, something is sounding familiar about your situation, and if anything else comes to me, I'll post another reply here.
Hang in there. Good luck
I'm brynn and I moderate some other, mostly unrelated forums here at HW. I'm just here on this board for a moment, looking for a certain post which a member asked me to read (long story). But I saw this thread and thought I'd add some comments. I certainly can understand how you want to get off the steroids. There is something ringing a bell for me, upon reading your symptoms, but I can't put my finger on it...
...probably because I have almost no experience with these things, meaning lung and sinus problems (except for my mom died of copd). But I have a great deal of experience with serious illness that can be neither diagnosed or treated adequately, in general. You don't mention what you think about any of the partial or temporary diagnosises which have been made along the way, or about any of the attempted treatments -- other than hating the steroids and maybe feeling fearful and definitely frustrated. What I mean is, it doesn't sound like you have taken the lead in directing (what I like to call) your medical team. It sounds like you are not the captain of your team.
And that, I don't mean to sound corny, or accusatory. I live with chronic pain, the cause of which has not, and cannot by available medical technology, be identified. It started when I was a teenager, only mild pain which I could keep completely under control with exercise. But it became gradually worse, until 20 years later, it was so bad that I could no longer work, and I was forced to file for disability. That was 12 years ago, and 6 years ago I finally got treatment! Yep, all that time I was in pain, but the deal with pain, is that if Drs don't know what's causing it, they 1 - aren't going to treat it, and 2 - are going to tell you it's all in your head. (although to some extent that's true of all illness/conditions) Plus I have a lot of seemingly unrelated symptoms, which further led Drs to believe the symptoms weren't real. And if I hadn't taken charge of the situation, well, I would have ended my life years ago ;-)
So here's what I mean by becoming the captain or leader of my team. I look at all my current Drs -- primary care (PC) plus all the specialists, physical therapist, psychotherapist, maybe certain nurses, physician assistants and MYSELF -- as a team. A team put together for the only purpose of making me better, and I'm the captain or leader. And I was more or less forced into the position. Like you, I had been through the mill with the medical community, doing whatever I was told, believing whatever the Drs would tell me (even that it was my fault) and hoping against hope the next Dr would know what to do. But I eventually became suicidal, with my fate held completely in the hands of professionals who clearly couldn't care less. So I had to put my fate in MY hands, where it belongs. I had to learn to be assertive!
First I started learning as much as I could learn about my symptoms, what they mean together and what they mean individually, about whatever partial or temporary diagnosis Drs had suggested, and about whatever *I* could figure out MIGHT be the right diagnosis, based on whatever I could learn. Personally, I kind of take this to the extreme, because I tend to be a bit of a science nerd, and actually enjoy reading medical articles about research and stuff. But one can still learn a lot for themselves just by reading non-technical articles (the health article in popular magazines and newspapter) as well as books (you can usually find books about certain illnesses in bookstores), and of course, the internet.
Then I had to learn how to be heard by my Drs. If they brushed me off (which as soon as I started to not go along with them without question, they kicked up the brushing-off by another notch), I had to find the courage to ask them to do whatever I had asked anyway -- a diagnostic test or scan, and experiment with a certain medication, whatever. If it was something I had read about which other people with my symptoms had been successful with, I had to try it!
And I tell ya', it's been a long, rough road. But 6 years ago, I finally hit my stride. I finally realized that every treatment decision I let a Dr make, by him/herself, fails. And not EVERY decision we make together is successful, but many are. And every decision I allow a Dr to make alone, does definitely fail. And the reason is that I know my body better than any Dr can, and how it works. Drs may know how human bodies are "supposed" to work, and when someone has a known illness, which can be definitively diagnosed and treated, I'm willing to turn them loose and let them do their thing. But when we have problems which cannot be accurately diagnosed, all Drs can do is guess, and without that intimate knowledge we possess, as residents inside our own body, their efforts are destined to fail. There is something about our experience of knowing how our bodies act and react, which makes us eminently qualified to have the last word on treatment. And just to be clear, I'm speaking of cases where an illness or condition can't be diagnosed -- a lot like yours!
Ok then, I'm starting to get carried away. The only concrete suggestion I could make, is to take an antihistamine 24/7. I don't know, maybe the Nasonex you're taking contains an antihistamine. But if not, it will definitely help with that dripping. My main point is that maybe it's time to take some control over your medical treatment. Learn as much as you can about your symptoms, and pay attention to what your body is telling you! And this is a good start, posting messages where other people might know something more about it. As I said at first, something is sounding familiar about your situation, and if anything else comes to me, I'll post another reply here.
Hang in there. Good luck
meegs,
I read your posting and just wanted to see if maybe i could help. I have been on steroids for about 2 1/2 years for an auto immune problem. I have had chronic sinus problems for about 12 years. I started a new program last week with a sinus nebulizer that i think is really helping. When you use rhinocort or flonase or any of the pump sprays you only get a split second to contact the areas that may be causing problems. I was told that my sinus problems may be vasomotor which means that i drain even if there is nothing in the air causing allergies. My doctor put me on the sinus nebulizer with a topical steroid that is the same drug thats in rhinocort as well as adding a little astelin(antihistamine). I do the treatment for about 10 or 15 minutes. I really feel like i am going to be half way normal in a couple more weeks. this nebulizer really hits the affected areas in my sinuses. My problem has mainly been in the ethnoids and sphenoids which are very hard to hit with the spray bottles. I also had sinus surgery about 6 years ago. I would really push your doctor to put you on this. It worked well for me.
Mark
I see that you have major health problems and I do feel for you. I have the sinus, rhinitis, allergy stuff myself and where I live in GA is not good but it is home.
Ok you are going to think I am nuts but if you have an acpuncture service in your area you might want to think about it. I have used one before for my back and I plan to go back just short on money and sometimes I have learned that modern medicine is way in right field and it needs to be in left field.
keep us all posted on your progress!!!
Take care.
Pattie
Ok you are going to think I am nuts but if you have an acpuncture service in your area you might want to think about it. I have used one before for my back and I plan to go back just short on money and sometimes I have learned that modern medicine is way in right field and it needs to be in left field.
keep us all posted on your progress!!!
Take care.
Pattie
Acupuncture is a fine alternative medicine used by the Chinese for a very very long time and now-a-days, it is actually becoming more and more recognized by many Dr.'s in the US. I know it has been used for treating pain and can be successful for many things. Though it too, is not a cure-all.
Many other methods of healing are now being used in a complimentary manner, especially when other methods aren't successful and they are finding that is another route to go.
Thank you Pattie, for bringing this to our attention! It's always a good thing to visit other avenues, if your Dr.'s cannot find ways to help and perhaps many of them would even recommend this to try.
Many other methods of healing are now being used in a complimentary manner, especially when other methods aren't successful and they are finding that is another route to go.
Thank you Pattie, for bringing this to our attention! It's always a good thing to visit other avenues, if your Dr.'s cannot find ways to help and perhaps many of them would even recommend this to try.
Sinusitis
This definitely plagues many people and as you can see from the following article-the medical profession is continuously trying to find things to help. Teri tongue
"In the United States, sinusitis is more prevalent than arthritis and hypertension and, when chronic, can be as debilitating as diabetes and cardiovascular disease. Unfortunately, lack of a clear definition of chronic rhinosinusitis (CRS) has made it difficult for clinicians to provide effective care or develop new drug therapies."
This definitely plagues many people and as you can see from the following article-the medical profession is continuously trying to find things to help. Teri tongue
"In the United States, sinusitis is more prevalent than arthritis and hypertension and, when chronic, can be as debilitating as diabetes and cardiovascular disease. Unfortunately, lack of a clear definition of chronic rhinosinusitis (CRS) has made it difficult for clinicians to provide effective care or develop new drug therapies."
Sorry if I sounded rude. I think we can all understand the spam problem.
Looks like meegs may have disappeared, hopefully he'll resurface, I really want to try to help the guy.
Teri may very well be right. I have a feeling that it probably is chronic sinusitis (in both of our cases). The most prominent symptom that I had was a terrible cough, but there are definitely underlying nasal symptoms. My cough has decreased by about 90% since I quit smoking, went on strong antihistamines, started eating well and exercising again. I still have some nasal symptoms though. Every morning I feel pretty nasty until I get in the shower and "rinse" out my nasal passages with warm water. Then I can make it through the day without too many problems. When I go to sleep, it gets a little bothersome again, it feels like postnasal drip.
I'd like to see how meegs responds to some of the steps I took. At this point, it can't hurt him.
I have other health problems, plus got a cold thrown in for good measure last week-so my asthma has just now started kicking in, as well! I'm waiting for the cure for that! yeah
I really hope that you are feeling better and I am happy that you seem to have found a way to help yourself the way you have!! We are responsible for our own health as well as the Dr.'s that treat us! As you know there are so many allergy, sinus, asthma products available whether OTC, or prescribed-if one took care of any of them, there wouldn't be the market out there that there is now. Also, we do have to consider that others may not be able to take the same things we take, so that's why I try not to recommend anything, just mention as it fits, what I take.
I really hope that you are feeling better and I am happy that you seem to have found a way to help yourself the way you have!! We are responsible for our own health as well as the Dr.'s that treat us! As you know there are so many allergy, sinus, asthma products available whether OTC, or prescribed-if one took care of any of them, there wouldn't be the market out there that there is now. Also, we do have to consider that others may not be able to take the same things we take, so that's why I try not to recommend anything, just mention as it fits, what I take.
Just wanted to give a progress report. I have had chronic sinusitus for about 10-12 years. had sinus surgery, shots, all of the different drugs, etc. I just got tested again and it turns out that i dont react to a whole lot other than dust and cat.(not dust mites). anyway, they said i probably got vasomotor rhinitis which means i drain no matter what. On my last post i talked about my new sinus nebulizer.( just like nebulizer for person with lung problems but you stick the special applicator up against your nostrils. I put pulmicort, astelin, and atrovent 6% in the nebulizer together. I do it twice a day for about 10 minutes. I actually feel like i am getting part of my life back. It is really working. The regular steroid sprays just dont hit enough area up there. I have most of my problems in the ethnoids and sphenoids. I dont think that the sprays can get up there the way the mist does. Anyway i just had to tell the world how much better i am feeling after feeling like hammerd dog meat for i dont know how long.. Hope this info can help somebody else. I am so excited about my progress. one more thing. I am using .25 pulmicort on the little plastic containers. They have .5 which i guess i twice as strong. I guess it just depends on how bad it is.
Thanks again for sharing in my victory,
Mark Olson 
Hi and welcome back, Mark!! tongue
I'm happy to see you here, I wondered what happened to you? yeah
Re your dispensing of med.'s - do you mix these med.'s together on your own-they are not already premixed? Was this what was prescribed by your physician?
I'm certainly glad that you are being helped by this method, as there are plenty of sufferers out there!
Here's a link to the Astelin, which I was not familiar with...and as most people know, that taking any medications should be ok'd by your Dr. so that there are no drug interactions or other health problems that could be compromised by taking an OTC medication.
Best wishes, Teri tongue
http://www.drugs.com/xq/cfm/pageid_0/htm_D04068A1.htm/type_mtm/tgid_54/bn_Astelin/qx/index.htm
I'm happy to see you here, I wondered what happened to you? yeah
Re your dispensing of med.'s - do you mix these med.'s together on your own-they are not already premixed? Was this what was prescribed by your physician?
I'm certainly glad that you are being helped by this method, as there are plenty of sufferers out there!
Here's a link to the Astelin, which I was not familiar with...and as most people know, that taking any medications should be ok'd by your Dr. so that there are no drug interactions or other health problems that could be compromised by taking an OTC medication.
Best wishes, Teri tongue
http://www.drugs.com/xq/cfm/pageid_0/htm_D04068A1.htm/type_mtm/tgid_54/bn_Astelin/qx/index.htm
The pulmicort comes by itself in these little plastic things that you squirt in the nebulizer bottle. Before you do this though the doctor had me squirt about 3 or 4 sprays of astelin in the nebulizer bottle. I asked him if it would be okay if i put a couple of squirts of atrovent 6% in as well and he said that was okay.. I wish they could put everything in one bottle that way i would only have one copay on my insurance. Also, i forgot to say that i got my IGe tested to see if i qualified for xolair. I did not qualify. my ige was on 15. it has to be 30. I am on prednisone for auto immune and doctor said that it could suppress the ige number. I also do a little saline rinse about 20 minutes before i do my neb. Either entsol bottle or waterpik. A lot depends on how much time i have.
Mark Olson
Mark, saline nasal rinses/sprays can be helpful-to be honest, I've never tried them, but a few years ago my daughter's Dr. had her using them...they did seem to help her in addition to other med.'s she was taking.
Best Wishes, Teri
Best Wishes, Teri
Mark,
Glad to hear that you found something that works. I'm going to see an ENT specialist in a couple weeks, I may ask him about the meds you're taking (if he determines that my condition is definitely chronic sinusitis).
Here's an odd question for you and Teri...have either of you found any articles that theorize as to why so many people are developing sinus and/or respiratory problems these days. I really had no idea how many people there are with asthma, allergies, and/or sinus disease until I started having these problems. It seems so odd.
One thing I do know, at least in my case, is that the air quality in my town has gotten terrible. Once upon a time it was a relatively rural area, not too much traffic, a lot of trees. The population has almost tripled over the last decade though. Now you can literally smell the air. I don't remember gagging on low-level ozone pollution when I was kid.
Robert
First of all most things that we do nowadays is to make sure things are clean! Antibacterial this and antibacterial that-and if you get ill...there was a time that everyone was given Penicillin if you had a sore throat. I was one of those, and now I'm allergic to Penicillin. 
This doesn't give your immune system a chance to build up and get strong, so we tend to not be able to fight off different allergens anymore. Everyone takes vitamins for everything, when we should be eating the foods themselves to build a natural immunity-make our bodies work a little harder.
I don't know how old any of you are, but I'm 53 and when I was younger, it was always, "Teri, eat your vegetables." tongue Later, it was (for a lot of us), who wants ###Fast Food??
So today, we wash our dishes and counter tops and especially our hands with antibacterial soaps, take vitamins, have a lot of medications to help us OTC and we freely indulge...so our bodies have never had a chance to grow strong, and the allergens are winning!
This doesn't give your immune system a chance to build up and get strong, so we tend to not be able to fight off different allergens anymore. Everyone takes vitamins for everything, when we should be eating the foods themselves to build a natural immunity-make our bodies work a little harder.
I don't know how old any of you are, but I'm 53 and when I was younger, it was always, "Teri, eat your vegetables." tongue Later, it was (for a lot of us), who wants ###Fast Food??
So today, we wash our dishes and counter tops and especially our hands with antibacterial soaps, take vitamins, have a lot of medications to help us OTC and we freely indulge...so our bodies have never had a chance to grow strong, and the allergens are winning!
Teri,
That does make sense. I remember reading an article about that a year or two ago. It mentioned how a lot of doctors are worried that common household bacteria are becoming resistant to soaps and other cleaners (i.e. facewash), especially those with triclosan in them.
I suspect that air pollution is playing a role too, especially with sinusitis. I live in northern VA, which was relatively rural once upon a time. We now have millions of people here, and the 3rd worst traffic in the country. On a lot of summer days, you can literally smell the air. Sometimes it seems like I'm inhaling thick haze. On the "code red" days when the ozone levels are high, it's really hard to stay outside for longer than 20 minutes. I wouldn't be surprised if it's starting to influence people's health.
Robert
Hi Robert, it's good to see you back! Hope you are doing better?! I know the air in a lot of bit cities, especially can be unhealthy, so you're probably right.