Medical Forum / Diseases and Disorders / Asthma / July 2004
Anyone have adult onset asthma caused by exposure to one allergen?
|
|
Thread rating:  |
Lissa - 24 Jun 2004 14:05 GMT I am just wondering this because I seemed to have developed asthma 5 years ago after having two cats for about 1 1/2 years. I did not get gradual worsening of symptoms, but got a bronchitis that turned into asthma and it really just never went away. So I am begining to wonder if the episode of bronchitis caused it instead of the cats. I do have an allergy to cats and have no pets whatsoever anymore, nor will I ever. I have recently started having trouble again with my asthma and I can not pinpoint a reason. Except this year I had a new baby who was in daycare one day a week all winter. HE brought home tons of bugs and such. I ended up with bronchitis at least 5 times. I now I am suffering from a flare up and no asthma medication is helping, not even the predinisone. So it makes me wonder if it is being caused by a bacteria instead. I am not suffering from a cold now, but wonder if all the bacteria from this winter is just not dead. I ALWAYS feel better after I take Zithromax from one of these episodes but after a few weeks it flares again. Any ideas? TIA!!
Lisa
Lou Pecora - 24 Jun 2004 15:02 GMT > I am just wondering this because I seemed to have developed asthma 5 > years ago after having two cats for about 1 1/2 years. I did not get [quoted text clipped - 14 lines] > > Lisa I had something similar happen. We have cats and I am allergic. But I never had trouble (never handle them -- although their dander does get into most household things -- unavoidable). Then about 5 years ago I got a bad case of bronchitis and the asthma set in and stayed. My alergist said the cat allergy was always there, but sometimes a particularly bad irritation (like bronchitis) can trigger asthma and then the inflammation does not disappear even when the acute disease does. I went on singulair about 4 years ago and it changed my life making things possible again (like exercising) that were not with the asthma. I've noticed that even when I go off singulair my asthma does not seem to flare up anymore. Maybe the inflammation is finally gone (although my doc said singulair does not work this way). Anyway, the bottom line seems to be that in the presence of an allergen an acute flare up can trigger the onset of a chronic problem. You don't necessarily go back to where you were before the problem. Hope that helps a little.
-- Lou Pecora (my views are my own)
They laughed at Galileo. They laughed at Newton. But they also laughed at Bozo the Clown. -- Carl Sagan
daparty - 24 Jun 2004 20:47 GMT the problem is , asthma is caused by many reasons. If you ask a real proactive Dr , the majority of reasons onset asthma occurs is air pollution . The one thing that is universal is asthma is going up in areas with higher pollution . Thats not to say asthma can't or won't happen in other areas. All one has to do is be near allot of traffic, work as toll collector, drive a truck or live in a home close to all of the above ( truck or bus depot) or drive a bike or run allot in traffic. I am telling people this because initally even though I smoked I thought it was bronchitis or bed bugs or roached or whatever. People wake up, often if we damage our lungs we become more sensitve to other things . I wish I never smoked but now when DRs see many many people asking for asthma meds , I am convinced more then ever , its the pollution that making many people sick more then anything else. People have come on to tell me they are sure its not the reason. It can happen but look at your environment and pollution and work to stop industry from killing our people and learn to use alternative vehicles in the future and get our President to be more concerned.about our air.. The worse part is you literally can't go out and exercise in many days with high particulate rates.Your simply beat.
> > I am just wondering this because I seemed to have developed asthma 5 > > years ago after having two cats for about 1 1/2 years. I did not get [quoted text clipped - 37 lines] > They laughed at Galileo. They laughed at Newton. > But they also laughed at Bozo the Clown. -- Carl Sagan CBI - 24 Jun 2004 22:23 GMT > HE brought home tons of bugs > and such. I ended up with bronchitis at least 5 times. I now I am [quoted text clipped - 4 lines] > better after I take Zithromax from one of these episodes but after a > few weeks it flares again. Any ideas? TIA!! Joy? Maureen?
Joy - 24 Jun 2004 23:34 GMT > > HE brought home tons of bugs > > and such. I ended up with bronchitis at least 5 times. I now I am [quoted text clipped - 6 lines] > > Joy? Maureen? CBI, I know, I know. It is just that since I was cured, I don't expect to spend much time here, you know? But then I remember how badly off I was and I do want to help others where possible.
Lissa, your observations that Zithromax helps could be a clue! Go to
http://www.asthmastory.com/ and read.
My trigger was thunderstorms (among other things), not cats, but the rest of what you are saying is familiar. I had Pneumonia 4 times in 10 years for instance. I *think* my trigger was established by living in a flooded house when I had a respiratory illness. Maureen has a similar history of bronchitis and we are both now thankfully asthma free. It does sound to me like you are like those of us with the kind of asthma for which the researchers are on to a cure. But they are still in the testing phase and it is not yet an approved treatment .So it is hard for me to watch people like you post because I know you might have to wait years! Or maybe not, if you are the kind of person who makes things happen. It is difficult (to say the least) to find a doc willing to prescribe long term antibiotics, but you should be aware of this research so you are first when it becomes protocol. Better yet, see if you live near a doc who is on the list at asthmastory, be proactive and make an appointment. Best of luck!
Joy
mcs - 25 Jun 2004 03:16 GMT > > lissac67@yahoo.com (Lissa) wrote in message > news:<e7ca6713.0406240505.231f1df9@posting.google.com>... [quoted text clipped - 35 lines] > > OK , I just mildly read thru this again . Joy I live in flooded house. It no longer floods because we put a waterproofed system but I still get asthma when I have to shut the windows and swear its something in house . The bottom line is it could be a number of things. I know what helps : CLLEAN AIR and no what doesn't help : this house and polluted outside air So my question to you , did you move? If the home caused your asthma? Or did the doctor and meds cure you? I will go back to read that website, thanks Steve
Joy - 25 Jun 2004 03:38 GMT > > OK , I just mildly read thru this again . Joy I live in flooded house. It > no longer floods because we put a waterproofed system but I still get asthma [quoted text clipped - 4 lines] > Or did the doctor and meds cure you? I will go back to read that website, > thanks Steve Steve,
The antibiotics "cured" me. In other words, my lungs no longer react to "triggers" like ozone or mold or whatever it is about downtown Atlanta and thunderstorms that used to set me off. I have no doubt that I could go back to being asthmatic should I get infected again and I would not hesitate, knowing what I know now caused my asthma, ordering antibiotics online if I had to (that is no doctor would give me a script). But I had no life even on steroids and the asthma meds had unacceptable side effects except for Singulair. And I had no side effects from the long term antibiotics. That is not true for most people. So each case is different.
There have been many discussions on this newsgroup in the past about who should try antibiotic treatment. Since it is not protocol you are unlikely to get your doctor to agree even if you bring in a stack of studies. And since there is not currently a test to prove which individuals will be helped, it is probable that you will have to wait. However, if you have no life as I did not...................
Joy
CBI - 25 Jun 2004 18:09 GMT > > lissac67@yahoo.com (Lissa) wrote in message > news:<e7ca6713.0406240505.231f1df9@posting.google.com>... [quoted text clipped - 12 lines] > spend much time here, you know? But then I remember how badly off I was and > I do want to help others where possible. I just didn't want to be responsible for the stroke you would probably have if I mentioned it first.
 Signature CBI, MD
Joy - 25 Jun 2004 18:46 GMT > > CBI, I know, I know. It is just that since I was cured, I don't expect to > > spend much time here, you know? But then I remember how badly off I was and > > I do want to help others where possible. > > I just didn't want to be responsible for the stroke you would probably > have if I mentioned it first. I HOPE I don't have a stroke! No, I wouldn't mind. Really. If someone where to post in my place, I would gladly get on with my life (now that I actually have one).
NorthShoreCEO - 25 Jun 2004 19:24 GMT ROFLMAO - very funny!! Actually, it would be a welcomed stroke. You're posting here regularly anyway, so if you now feel comfortable enough with this theory, then PLEASE do so, and also feel free to refer them to the asthmastory.com site. It would be appreciated more than you know.
> I just didn't want to be responsible for the stroke you would probably > have if I mentioned it first. > > -- > CBI, MD NorthShoreCEO - 25 Jun 2004 17:19 GMT > > HE brought home tons of bugs > > and such. I ended up with bronchitis at least 5 times. I now I am [quoted text clipped - 6 lines] > > Joy? Maureen? NorthShoreCEO - 25 Jun 2004 17:34 GMT Sorry, CBI - didn't know I was being paged here and only read when I get a heads up.
Lissa is also posting on the asthmastory.com site and it does sound like she's got asthma that might be caused by either mycoplasma or chlamydia pneumoniae. Her doctor has referred her to a pulmonologist and she's going to print out some studies and bring them to him. Hopefully he'll be open minded and treat he with longer term antibiotics. The fact that she got bronchitis at least five times is a big red flag and brings back memories of my own.
CBI - if you're willing to treat people (or already treating people) with longer term antibiotics if they have asthma that isn't well managed and are sick all the time like this, please drop me a line and let me know if we can refer people to you. We haven't found anyone in your area yet that we can send people to if their doctors aren't willing to look into the research at all, so it would be nice to know we've got at least one doctor we can refer people to.
> > HE brought home tons of bugs > > and such. I ended up with bronchitis at least 5 times. I now I am [quoted text clipped - 6 lines] > > Joy? Maureen? Joy - 25 Jun 2004 18:44 GMT > CBI - if you're willing to treat people (or already treating > people) with longer term antibiotics if [quoted text clipped - 6 lines] > would be nice to know we've got at least one doctor we can refer > people to. Just like you Maureen . The direct approach! : )
NorthShoreCEO - 25 Jun 2004 18:55 GMT LOL. Hey, I figure it's worth a shot if there's a possibility it may help someone. The worst he can do is say no. It took me months to find a doctor in the U.K. for somebody, so I'm hoping takes less time to find someone on our own turf.
> > CBI - if you're willing to treat people (or already treating > > people) with longer term antibiotics if [quoted text clipped - 8 lines] > > Just like you Maureen . The direct approach! : ) Joy - 25 Jun 2004 19:52 GMT > LOL. Hey, I figure it's worth a shot if there's a possibility it > may help someone. The worst > he can do is say no. It took me months to find a doctor in the > U.K. for somebody, so I'm > hoping takes less time to find someone on our own turf. Smart thinking. How did you ever find someone in England?
NorthShoreCEO - 26 Jun 2004 12:52 GMT Joy, missed this post yesterday.
I emailed one doctor at a time starting at the top layer of the European Respiratory Society. It would generally take several days for them to respond, but almost all of them very graciously took the time to do so. I just explained this womans situation, asked them to look at some research (I provided several links), and asked if they would be willing to either treat her, or at least contact Dr. Hahn for more information in consideration of treating her. It was a somewhat arduous process because they're busy and I wouldn't hear back for several days. As they referred me to someone else, I'd write that person, etc. At one point, I found a doctor who said that if she came in to see him, "he'd see". When pressed further for some clarification that "he'd see" meant he'd be open to treating her with antibiotics, he wouldn't commit. She wouldn't go because if she went to him she'd be stuck and unable to go to anyone else at that point. I can't explain this fully because I'm still confused about their health system. In the end, she was referred to the same person by three different doctors, and it happened to be a doctor she'd seen anyway, who tested her and found high titers for mycoplasma, and gave her twelve weeks of Clarithromycin (Biaxin). Well, we know based on what some doctors are prescribing for this, and based on what several have posted, that twelve weeks is fine for Azithromycin, but it takes nine months to a year on Clarithromycin - so she didn't get any better and he wouldn't do more. In the end, I found a doctor who said if she was released from her current doctor (not the doc previously mentioned), and from her private doctor, he would see her and treat her. The problem is, the one doctor has refused to release her, sending her instead for another round of tests. It's been very frustrating for her and I'm sure being trapped in your HMO, you can relate.
> > LOL. Hey, I figure it's worth a shot if there's a possibility it > > may help someone. The worst [quoted text clipped - 3 lines] > > > Smart thinking. How did you ever find someone in England? Joy - 26 Jun 2004 14:57 GMT > Joy, missed this post yesterday. > [quoted text clipped - 41 lines] > being trapped in your HMO, > you can relate. It is absolutely amazing what you have gone through. I admire your dedication - I know I looked around Atlanta unsuccessfully for a while for Karen, You remember. She's still hoping for help also. She has also tested positively for C Pneumonia, but her doctor doesn't think she should take the antibiotics because she is now sensitive to most of them, having been on them so often in short bursts throughout her teens. If she had been treated appropriately from the beginning with long term antibiotics, she wouldn't have all these continuing problems IMHO. Jim Quinlan said his history was similar. He was also always sick and on antibiotics several times a year, but since he got over the asthma 10 years ago, he is never sick and no longer needs any meds including the several times a year antibiotics.
I love it every year when my HMO announces their profits are up so many percent over last year. They are pretty good about surgery, I have to say. They just have removed all the drugs from the approved list and I find that frustrating. The last time I looked, they had nixed all the asthma meds except Singulair and Advair and generic albuterol. They no longer cover any reflux meds or antihistamines because there are over- the- counter drugs available (Prilosic(sp) and Claritin), and you are out of luck if those don't work for you. They would cover at 100% an in home light unit for Psoriasis, but..........they would only let you get it from their sources and none of their sources carry one of those. So, I had my tonsils removed which sounds like a crazy fix, but there were small studies out there that indicated it would work. Like I said, they are good about surgery.
CBI - 28 Jun 2004 03:34 GMT > At one point, I found a doctor who said that if she came in to > see him, "he'd see". I think that is likely to be the best you wille ver get out of a doc. I can't imagine anyone being willing to commit to treat a patient that they have had no contact with.
> The problem is, the one doctor has refused to release her, > sending her instead for another > round of tests. It's been very frustrating for her and I'm sure > being trapped in your HMO, > you can relate. There's a fascinating concept. Obviously, in the US some people are left with very limited choices of who they can see but it is never up to the doc to release the patient.
 Signature CBI, MD
NorthShoreCEO - 28 Jun 2004 05:05 GMT > I think that is likely to be the best you wille ver get out > of a doc. I can't imagine anyone being willing to commit to > treat a patient that they have had no contact with. I was surprised by the doctor who said he would treat her. I was expecting and waiting for something along the lines of, "I would be open to treating someone with this regimen if, after looking at her medical history, it appeared her problems began with her illness." That was going to be good enough, I thought, since she'd already been tested for mycoplasma and titers were elevated enough where the doctor said he knew she'd had it. Given her history, it seemed a safe bet that if someone was open to treating someone, odds would be good she would be that someone. Unfortunately, the "we'll see" has been said so many times by doctors who later indicated they never were open to it at all, that I was looking for something more than that. It's standard fare for people who are deferring their "no". As a parent, I've used the "we'll see" myself when I've been too tired for the debate that would follow if I'd said "no way".
> > The problem is, the one doctor has refused to release her, > > sending her instead for another [quoted text clipped - 6 lines] > people are left with very limited choices of who they can > see but it is never up to the doc to release the patient. I asked her if she would be responsible for paying for those tests, and she said no, so you can't even use the "I can't afford it" argument over there. Many people are intimidated by doctors here, but in the end, we have the right to walk out and go find someone else if we're not happy with our doctor. I get the sense from some people in the U.K. who have problems, that they're actually afraid to say anything or ask any questions that may offend their doctor, or they may never be released. I imagine there's some mechanism in place to dispute that decision, but the red tape must be horrific.
SimonDS - 01 Jul 2004 19:12 GMT in my experience most people in the UK do ask questions and can change doctors if they wish. the doc won't like it but they can. in fact only last week the government here advertised the fact patients have a choice to choose there hospital and doctor
> > I think that is likely to be the best you wille ver get out > > of a doc. I can't imagine anyone being willing to commit to [quoted text clipped - 52 lines] > in place to dispute that decision, but the red tape must be > horrific. Joy - 28 Jun 2004 05:08 GMT Hanging out at Cd++ with the Germans? One more string quartet! just ONE! ". I think that is likely to be the best you wille ver get out
> of a doc mcs - 26 Jun 2004 01:32 GMT > LOL. Hey, I figure it's worth a shot if there's a possibility it > may help someone. The worst [quoted text clipped - 16 lines] > > > > Just like you Maureen . The direct approach! : ) The reason Drs. don't like to prescribe anti biotics is because people build up an immunity against its effectiveness. Until more proof of these correlations become known , one is at least able to choose the few options available. I find I get asthmatic in both my home and bad air days so I am not sure the correlation with infections holds true for me. I just need a clean city to go to but no one offers any help and trust me I need some . I feel like a failure because I can't do it on my own sometimes. yet I have come along way from anxiety and cigarettes .
NorthShoreCEO - 26 Jun 2004 02:14 GMT I was on antibiotics four to six times a year anyway, and that's often the case with people whose asthma was the result of bacteria. I felt it was better to go on the antibiotics for a longer than normal period and stop the cycle, I haven't been on antibiotics in over a year - something that hasn't been the case for me in at least twenty years.
> > LOL. Hey, I figure it's worth a shot if there's a possibility it > > may help someone. The worst [quoted text clipped - 25 lines] > feel like a failure because I can't do it on my own sometimes. yet I have > come along way from anxiety and cigarettes . Joy - 26 Jun 2004 06:19 GMT > I was on antibiotics four to six times a year anyway, and that's > often the case with people whose asthma was the result of [quoted text clipped - 48 lines] > yet I have > > come along way from anxiety and cigarettes . Well I have a couple of thoughts. The fact that you have triggers like pollution is immaterial. Your lungs are responding and they will stop doing that if you no longer have the infection if that is the cause of your asthma (if you can use my case as a tests case). I had triggers and my reading on that says it means little. It appears they were related to some complex baterial/sensitively reaction now over since I got over the infection.
It will take some time to figure out the half of asthmatics who will be helped IMHO. I personally didn't suffer from anxiety disorders or a smoking habit - as a matter of fact, I had some real problems with my Chronic Bronchitis diagnosis because I didn't smoke and I realized that only 1% of nonsmokers got Chronic Bronchitis.
Ok, so what it comes down to is this: if you are going to be cured of asthma by antibiotics, are you going to walk away? The research by Docs like Dr Hahn say that you are going to have to take antibiotics to get better if you are in the group who has C or M Pneumonia so you are going to sacrifice yourself - how noble!. Perhaps you are hoping for another "fix" but if that is the cause of your bronchospasm, do you think people going to ignore the cure? In other words, if you have an infection you can't get over, are you going to ignore it and not treat it, the only hope you have coming? Even for the common good! I wouldn't because there isn't a damn soul out there paying my bills and I refuse to live as did, SOB. On the other hand, perhaps your asthma is the result of some NOt+YET+discovered pathogen or allergen and you are now no longer having to face this choice. That would result in the accompanied problem of tracking on the research yourself because no one out there has stepped into the spotlight to relieve you of your duty to cure yourself. You have asthma, a not fixable disorder.You might think me cruel, but this is how I lived (or didn't) for 10 years. So, perhaps you are in the other half. That was actually the half I thought the medical profession was focused on - and I assumed my own case was years from being solved. Thank you again Dr Hahn.
Joy
mcs - 28 Jun 2004 00:56 GMT Joy, You lost me in your anger Sob? ? ? and I am not sure you were talking to me but if its the air inside this house, isnt one option moving to better house? I realize its difficult but it might be better then taking antibiotics. I do get sensitve to dust and probably whatever hell is in this house that is setting me off but no one cares. I feel almost to have a break down so someone can send me to cla arrangement in another town. First I might have to claim a breakdown in a clean city. If all that fails , maybe I will try antibiotics. Its all very interesting. and I didn't say it wasn't I am just coming off a lung infection and pain on my right side and was given antibiotics so Its not like I don't believe. I just know when I am in clean air I am ok. Asthma sucks and when your sick no one cares, not a soul. I pleaded my case and there is just so much I can do. I seriously hope I can get where I need because asthma sucks and yes its great you never smoked. really , I was too dumb at that time to rationalize.
> > I was on antibiotics four to six times a year anyway, and that's > > often the case with people whose asthma was the result of [quoted text clipped - 83 lines] > > Joy Joy - 28 Jun 2004 03:35 GMT > Joy, > You lost me in your anger Sob? ? ? and I am not sure you were talking to me [quoted text clipped - 11 lines] > get where I need because asthma sucks and yes its great you never smoked. > really , I was too dumb at that time to rationalize. I will admit to being angry at all the wasted time and all the road blocks (I'm sure they think they are well meaning) folks throw up when the antibiotics for asthma topic comes up for discussion. But how can I be angry at you? We have the same problems. Not only do you have asthma, but then there is the financial loss you suffer with the flooding. Boy, do I know about that. Maureen has had a similar experience and I know she also knows what it is like. You.don't feel well enough to cope with it all. I had surely been there.
I have no way of knowing if the antibiotic cure will benefit you (short of your going to National Jewish and having a test). I just don't want to see anyone throw their one chance out because they are unwilling to take long term antibiotics. People like Dr Hahn have been facing this for years. They actually have the answer for so many of us, and no one is listening because the "Fix" involves antibiotics. The fix is the fix. You can turn it down, but then you have to deal with your ongoing condition if your problem is C or M pneumoniae. This is not a big problem for the asthmatics who are well controlled on meds. But you aren't in that situation if you can't live in your own house. So then you have to deal with the unknown (the antibiotics may or may not help) and the unwillingness of your doctors to prescribe the meds. Most people just give in and don't purse the hope of a cure. It truly is a shame. Maureen and I were comparing notes once. We are similar in that we don't let things like that stop us. People may not appreciate being mowed over as we head for our goal, but think of the benefits of knowing people like us. Not only did we prevail, but we hang out here hoping others suffering can make it.
SOB= Short of breath. I forget that not everyone knows that. Been posting too many years.
I forgot to answer your question several posts back. I did move out of my flooded house (Kansas), and I didn't get better, but worse. Could be because I moved to Atlanta, which is not known as having clean air. I did get better when I moved several miles south of ATL, but wasn't cured. Singulair helped too and I did start to take that about 5 years ago. Now though, I need nothing. I lay in bed in the morning and JUST breathe. You don't know how great it feels -effortless.
Let me fill your in about some of the past posts relating to this issue. The researchers into asthma/infection connection *think* they can help half the asthmatics. It isn't clear to me if they don't think they can help the rest because the cause of their asthma is something else, or if the damage due to the infection (remodeling) has become permanent so it is basically too late. I have read several studies which suggest that EVERY kid with asthma-like symptoms should be placed on long term antibiotics in order to prevent their condition from becoming permanent. On the other hand, I have read that some people *think* asthma is caused by antibiotic use which results in allergic inflammation. Stay tuned. It isn't likely either side has the whole story. You are really only dealing with your asthma though so you need to know how you are the same or different from the people who are helped. POST at Jim Quilan's site. Ask lots of questions! See how their onset was like yours. Or the triggers.Your goal is to cure yourself because believe me, no one in the medical profession is going to step up to the plate in a timely manner. I certainly do believe the researchers will solve the problem - I just don't think they will do it in the near term.
Meanwhile, you are pretty much right that you have no help coming IMHO. Everyone seems to think that asthma is SO WELL CONTROLLED on current medications, that you are just a complainer. I know that isn't true because it happened to me. I had a coughing asthma problem. Coughing in my sleep, coughing around perfume, coughing, coughing, and more coughing. I never rested so I was OFTEN dog tired. The docs told me I should have been more controlled on the meds, but my point was, if people are so well controlled, why do 5000 people DIE every year in the US of asthma? If you are not well controlled in your house, why do you think those asthma meds aren't working for you? You don't have to answer. I know the frustration. Just don't ignore the possibility that your asthma is caused by infection. I had triggers that appeared allergic (high ozone days, wet carpets, perfume, thunderstorms). I was also adult onset after a respiratory problem and my research told me THAT indicated my problem was infectious. Maureen has more contact with more people who are helped and not helped than I do. I know for a fact she will help you determine if you are like the people who are helped. She works very hard to help everyone who posts in the forum at asthmastory.
Joy
NorthShoreCEO - 28 Jun 2004 05:16 GMT Thanks for the vote of confidence, Joy - you give me more credit than I deserve.
All I'll add to the post is that flooded living areas and mold problems seem to have been the onset of several people's problems, and moving out of the home didn't do much to help that. I believe Jim Quinlan's asthma began shortly after their basement flooded, and he even changed states thinking FL would be better than MI - only to find it did no good.
Jim didn't suffer from allergies, but I do and they got more severe as time went on. I used to joke that by the time I was sixty, I'd probably be allergic to everything but perch (I hate perch) and the color brown (I hate brown). It's almost as though the body just becomes more and more sensitive to everything around you.
When I took the 12 week course of antibiotics, the asthma resolved, my sinus problems cleared up about 85 to 90% and my allergies went from severe to mild.
My basement flooded just around the time that I went to see Dr. Hahn last year. It was a blessing actually, because we discovered mold from two foundation cracks that had resulted in flooding about five years earlier. (I have water issues....lol) If the mold had remained there, it may have affected the outcome for me. So flooding was a good thing. State Farm telling me that if I submitted my claim my policy would be cancelled, was a bad thing. God, I hate the insurance industry.
I think if the environment - the dirty air - really caused asthma, then the people living in NYC following 9-11, and those living in CA with all those fires, would have a higher rate of asthma, and I'm not sure that's the case. It might add to one's breathing difficulty, but I doubt it's the cause.
> > Joy, > > You lost me in your anger Sob? ? ? and I am not sure you were talking to [quoted text clipped - 94 lines] > > Joy Joy - 28 Jun 2004 05:27 GMT > I think if the environment - the dirty air - really caused > asthma, then the people living [quoted text clipped - 3 lines] > to one's breathing > difficulty, but I doubt it's the cause. I don't know. Those firefighters are clearly suffering. Even though EPA assured them they would not. We are still waiting for the 3 year background study of normal levels of >2micron stuff. In a way, I really would hate to see those of us who have asthma benefit by this horrific experience.
mcs - 01 Jul 2004 00:24 GMT > Thanks for the vote of confidence, Joy - you give me more credit > than I deserve. [quoted text clipped - 42 lines] > to one's breathing > difficulty, but I doubt it's the cause. North Shore, Do me a favor, try going to Hawaii and walk along the shore or go to the mountains near Denver or on the North coast of California ( if you can afford it) and see if that don't help you. I have started to write to a few people ( beg for a place eventually) and they came there from other areas and they improved. Your right about it may not cause our condition but its definitely not a neutral to me , its a inflammatory adding to the problem. I have so many links showing how pollution is worsening and now the number of prescription for singulair in many northeastern cities is approaching the tOP! so I definitely see the connections. I didn't need the mds who suggested that the air is now killing tens of thousands of US citizens each year. I saw the numbers of people stop running in this area. I saw my reaction in comparing the breathing after a run in Philly to a run at the shore or in Maui. So while I believe my flooded basement is one major factor and my increasing sensitivity to other things as you described, I am not even near ready to agree about your thoughts on the environment. So I respectively disagree. Steve
> " mcs - 29 Jun 2004 12:07 GMT Hi Joy I deleted some lines and thanks for your response.
"posts back. I did move out of my
> flooded house (Kansas), and I didn't get better, but worse. Could be because > I moved to Atlanta, which is not known as having clean air. I did get better > when I moved several miles south of ATL, but wasn't cured. Singulair helped > too and I did start to take that about 5 years ago. Now though, I need > nothing. I lay in bed in the morning and JUST breathe. You don't know how > great it feels -effortless. Well its amazing. I went to the shore for a few weeks and not to my amazement really, the air coming off the ocean stopped my asthma. I had no days with asthma! Of course I was not in the house. I think that pollution and global warming is definitely influential. In my city we are bombarded with Temple Lung Center commercials, motorized wheel chairs and other hospital and drug tainted commercials and I don't think its an accident.Yet while I complain about the air in Philly and I see all the people in the Drs office asking for meds by the way for asthma, there is no or very little growing concern. My system is soo sensitve to the air, and I kid you not. I can go to the park and tell you if the air is clean or not almost to an exact science. ( we have the air grading system around here for five pollutants) For the past three weeks we had one or two days only of clean air. Many parts of the nation had many more good days. I see how this affects my asthma. Yet if you have a home, would you give up all your wordly possessions just to move in cleaner air? You might say yes, but to also move to an apt instead of a home? You might say yes, but I like to talk to myself and go kicking and screaming. In a way I want people to agree , I want to be able to live in my town happy. Going to a foreign city to me with no friends or relatives is soo whatever but its getting more likely it will happen. About the antibiotics , thanks for the story. I was taking antibiotics for the lung affection and while coughing and stuff stopped, my asthma did not. Maybe I need to take the right kind? Take care and thanks for clearifying your response. Glad your symptom free, which is totally amazing .
> Let me fill your in about some of the past posts relating to this issue. The > researchers into asthma/infection connection *think* they can help half the [quoted text clipped - 33 lines] > > Joy Joy - 29 Jun 2004 15:40 GMT > Hi Joy > I deleted some lines and thanks for your response. [quoted text clipped - 33 lines] > Maybe I need to take the right kind? Take care and thanks for clearifying > your response. Glad your symptom free, which is totally amazing . I had a similar experience. Went to Florida and I was absolutely amazed how much air I had when I got out on a boat. I was just there 2 weeks ago and I didn't have any trouble with my sinuses (that has not stopped even though the asthma/coughing/sob thing has). I think that I will have to retire there! I worry that the infection is lurking in my sinuses, waiting to do me in another day!
When I had asthma, I could tell you if it was going to rain or not and I could tell you if it was a high ozone day without looking it up. Because of the type of asthma I had, moving was only a short term fix. After I moved south of ATL I was better, but I started going downhill and finally was diagnosed with Chronic Bronchitis. I believe you will find many asthmatics have a short term improvement when they move, only to return to being asthmatic after they have been in a location for awhile. So I don't that I could recommend that moving would actually help you in the long run based on my experience.
Joy
mcs - 30 Jun 2004 00:08 GMT "Joy" <none@nospam.com> wrote in > > Maybe I need to take the right kind? Take care and thanks for clearifying
> > your response. Glad your symptom free, which is totally amazing . > [quoted text clipped - 5 lines] > in another day! > Well there are many parts of Florida hot, it still has clean air probably in part from the air coming off the clean water. West and or east.I would love to go to the shore to live but apparently many other people are discovering this and prices have shot thru the roof. The one negative, is while jogging along the beach saw ten bags of hospital waste wash ashore. in various placeJust think about deep breathing that.
> When I had asthma, I could tell you if it was going to rain or not and I > could tell you if it was a high ozone day without looking it up. Because of > the type of asthma I had, moving was only a short term fix. Well there are some good cities without ozone and rain never bothered me. Often fronts that bring cool air from the ocean or out west start out as a storm.
After I moved
> south of ATL I was better, but I started going downhill and finally was > diagnosed with Chronic Bronchitis. I believe you will find many asthmatics [quoted text clipped - 3 lines] > my experience. > Well Joy not to Atlanta. Atlanta has a negative pollution rating. American Lung association gives Philly an f and Atlanta not much better if I remember
> Its too bad we have to go thru all this but its what we have to do but its good your getting some relief. Northern California is suppose to be good and or but your talking huge money. Iowa or Idaho , like Boise is suppose to be a nice city. If anyone wants to go let me know. lol>
mcs - 29 Jun 2004 23:57 GMT "> > Let me fill your in about some of the past posts relating to this issue.
> The > > researchers into asthma/infection connection *think* they can help half [quoted text clipped - 25 lines] > > > > Meanwhile, you are pretty much right that you have no help coming IMHO. Well I am getting to a point that medicare is going to have pay or help pay for meds. If they helped me to move or if the Govt understood some stats that say asthma is increasing and tens of thousands might die just from breathing our air ( yes the studies are there now) then why can't they see the costs for outweigh the savings? Some people are just too sensitive and some people might rightfully be normal and just experiencing a reaction from bad surroundings. Right now my next move is to get carpets cleaned real good . I already tore the ones out in my room.Personally I wish I could go inside my duct system with ammonia and clean the damn things myself , can you imagine how much dirt would be in there? I remember seeing a piece on nightly news of allergy free places to live in Arizona. I have become sensitive to many things but the worse is the general condition of the air in the city. About why no one does anything or cares? I have no idea, its not like there isn't any correlations between the smog and the rising asthma. Its just that we are still to insignificant a number to dictate any concern. People with money just move, they don't complain mainly. Again as for the infection angle, this and moving are my only two salavations although a move is most likely but then I will have practically no worldly possesions and which city? lol just talking to myself.
> > Everyone seems to think that asthma is SO WELL CONTROLLED on current > > medications, that you are just a complainer. I know that isn't true [quoted text clipped - 23 lines] > > > > Joy Joy - 30 Jun 2004 01:04 GMT > Well I am getting to a point that medicare is going to have pay or help > pay for meds. If they helped me to move or if the Govt understood some stats > that say asthma is increasing and tens of thousands might die just from > breathing our air ( yes the studies are there now) then why can't they see > the costs for outweigh the savings? Did you see the court case decided today about the workers in the popcorn factory who claimed the "butter" was giving them respiratory problems? No one from the gov't is going to help you, not even the courts if you claim externalities. Snog is an externality.
Some people are just too sensitive and
> some people might rightfully be normal and just experiencing a reaction from > bad surroundings. Right now my next move is to get carpets cleaned real good [quoted text clipped - 10 lines] > salavations although a move is most likely but then I will have practically > no worldly possesions and which city? lol just talking to myself. That is all I can offer as advice. If you don't have an infection, I don't believe I have read any other research I find compelling to suggest to you. I am sorry.
mcs - 01 Jul 2004 02:35 GMT > > Well I am getting to a point that medicare is going to have pay or help > > pay for meds. If they helped me to move or if the Govt understood some [quoted text clipped - 7 lines] > one from the gov't is going to help you, not even the courts if you claim > externalities. Snog is an externality. HI Joy, No I did not . I realize that but I didn't realize America dealt with problems by not going over the variables. It has been the rule of thumb in this topic to keep the status Quo more or less and then let the chips fall wherever . However if the general perception starts to change , for instance Philly area is losing population, and lots of people will make noise and not go down quietly, perhaps they will add one and one up and realize just because the news media ignores it, this policy we have, with coal and oil might actually harm more people then it helps . The people are smart and will get the needed information to survive and in fact be more proactive if the city and govt and news reporters think it will hurt the city by analyzing this. To hear the wonderful and warm forecast when the pollution links to quality charts for the day say WARNING is almost too unbelievable to understand. How this country is better by killing off its citizens or making them sick, is way beyond me.
> Some people are just too sensitive and > > some people might rightfully be normal and just experiencing a reaction [quoted text clipped - 24 lines] > I am sorry. > No problem, I didn't say I didn't believe , I just read with open mind. thanks for your take on this and continued good health. Steve
Joy - 02 Jul 2004 01:38 GMT > > > Well I am getting to a point that medicare is going to have pay or > help [quoted text clipped - 59 lines] > > No problem, I didn't say I didn't believe , I just read with open mind. > thanks for your take on this and continued good health. Steve This is where you are going to have some trouble with your argument. Asthma rates are not going up, but have stabilized. It isn't that I don't agree with you, I just don't think you can prove it. And again, people think you are just fine as long as you take your meds. Right.
I wanted to tell you about Arizona before I leave this thread. The WebMD asthma board is monitored by Dr Enright who lived in Arizona and there was a lengthy discussion there several years ago about how asthma deaths were increasing there . There was speculation the reasons that I can't recall, so you might try and locate that thread. They have a search engine to aid you. Basically though, most people with asthma find that if they move, they have several good months and then they relapse.
If you live in Georgia, you can get a Password at your library which will allow you to search databases like Medline. Perhaps you have something like that there. You might want to keep up with the latest research - just because you can't live in your own house. Medscape is also good, and they will send you a newsletter if you subscribe. You never know when your answer will surface!
Joy
mcs - 28 Jun 2004 01:01 GMT Ps. I called one of those places on the list for cleaning duct work etc that guy previously posted about. Like I alluded to beforeI got seven different responses . Now who among you will believe a guy who takes an hour of tests and sends them to laboratory for over 1000 dollars? And you still don't have any reassurance of any resolve? But then again I can have my chimney sweeped, my duct work cleaned with camera inside it and sprayed with anti mold stuff because the last time they sprayed it they sprayed the wrong stuff not epa appraoved and likely to cause me worse problems. Ok so what else? I can have home engineer , or a new filtering system. or what else? Heck I heard it all and you know whats weird , few of these companies work affordably or guaranteed they will find whats wrong or work together. So that nap../// ?? whatever its called is a loosely put together of people who can't provide good affordable options.
> > I was on antibiotics four to six times a year anyway, and that's > > often the case with people whose asthma was the result of [quoted text clipped - 83 lines] > > Joy CBI - 28 Jun 2004 04:19 GMT > CBI - if you're willing to treat people (or already treating > people) with longer term antibiotics if [quoted text clipped - 6 lines] > would be nice to know we've got at least one doctor we can refer > people to. Before you get too excited I don't think I am as much of a convert as you are hoping. The good news is that I have never been as against the theory as I have been painted (so some of my apparent motion on the topic is illusionary). The bad news is that I am not as completely sold as you might hope. I am sure there is a subset of asthmatics for whom antibiotics would be beneficial. I doubt it is as high as the 50% figure that gets quoted a lot but probably is a substantial percentage. Lissa has similar characteristics to the patients in the studies that found rates as high as 50% (which are not typical of all asthmatics) so that is probably about the shot she has.
I would contrast her case to Mr. Stults's (at least as they are described here). She can site a specific onset to her symptoms following an adult respiratory infection and her boughts are described more as bronchitis with the primary treatment being antibiotics with a good, although short lived, response. She also implies that she has not done well on aggressive conventional therapy. In MS's case his symptoms have been long standing (possibly starting in childhood) and not identified as starting after an infection. It sounds like his doctor may just believe that asthma exacerbations should be treated with antibiotics and so it is not as clear what is going on. His past responses to non-antibiotic regimens and his current apparently good response to a conventional regimen also suggest a non-infectious cause. His life time of respiratory symptoms without an x-ray gives me pause about the adequacy of his care to date. While infection was one of the first things I thought of with her I actually do object to it being suggested so vociferously with him (but didn't feel up to dredging up old arguments).
Obviously, the histories we have here are very incomplete and many more details would be raised and confirmed in a face to face meeting. I'm not saying MS shouldn't be tested and possibly treated or that Lissa definately should be. It is just that as the stories are stated now I would be much more enthusiastic about treating her than him.
To get back to your question: The short answer is that yes, I would certainly consider it. Her story sounds good for having asthma with an infectious cause and the responses to azithromycin are encouraging. It would probably be a good idea to send the blood studies but I am not sure how much the results should affect the decision to treat since we know so little about the predictive values. I'd bet that the negative predictive value of the test in a person with an approximately 50% pretest probability is not low enough to exclude the infection. Things like a history of smoking, non-compliance with following a conventional regimen, and (my perception of her having) unrealistic expectations would make me less likely to treat.
On a related note - there has been something that I have been curious about: Do you get many people complaining of having problems getting prescription plans to cover the prolonged courses of antibiotics?
-- CBI, MD
Joy - 28 Jun 2004 05:17 GMT > On a related note - there has been something that I have > been curious about: Do you get many people complaining of [quoted text clipped - 3 lines] > -- > CBI, MD Well, I live here in CDC county. The answer is YES, you can't get a prescription and the response I was given is it has to do with protocols or "those are just studies".. But, the docs who I have asked at CDC say if the patient needs antibioitics, they should get antibiotics. So what seems to be going on here is docs are translating the CDC call to reducing antibiotics, to no antibiotics.
Joy
CBI - 28 Jun 2004 13:59 GMT > > On a related note - there has been something that I have > > been curious about: Do you get many people complaining of [quoted text clipped - 10 lines] > going on here is docs are translating the CDC call to reducing antibiotics, > to no antibiotics. I was referring to the insuranced coverage after the doc has tried to write the rx.
 Signature CBI, MD
Joy - 28 Jun 2004 15:10 GMT > > > On a related note - there has been something that I have > > > been curious about: Do you get many people complaining of [quoted text clipped - 12 lines] > > I was referring to the insuranced coverage after the doc has tried to write the rx. Sorry,
I have not heard of people having that trouble.
Joy
NorthShoreCEO - 28 Jun 2004 05:49 GMT I can't speak to Mr. Stultz's case, because I admit I didn't read through his post carefully, due to a heavy workload last week, but I do want to say something about childhood asthma when one's childhood was eons ago.
I met with Dr. Hahn for nearly three hours and I couldn't recall being really sick with asthma following the illness. I recalled being really sick a couple of times, but in those days the doctor either came to our house (yes, I'm older than dirt), or prescribed over the phone. I remember being winded when I was a kid, though not sure when that started, and then having allergies and then having a full blown asthma attack when I was in my teens. Dr. Hahn felt the asthma was probably present during the winded years, but not fully presenting itself. He uses the phrase "cautiously optimistic" a lot. He didn't use that in my case. He said he was fairly certain the antibiotics would NOT resolve my asthma because I'd had asthma for so long, and because the asthma didn't appear to be really related to any illness, and because my son had exercise-induced asthma and he felt it could be hereditary because of that. We were both hoping my asthma would improve so it would be well managed and the quality of my life would improve.
So much of this is based on memory which is faulty. I thought a lot about the illnesses I had as a child after my visit with Dr. Hahn, and I now think I may have had pneumonia way back then. I know at one point I was so sick that I felt just as I did when I got pneumonia as an adult, only the doctor was very busy and prescribed antibiotics over the phone. Many of them did that in those days - at least in Chicago.
And then later I recalled having had pneumonia about six years ago. My doctor tested me and told me I had mycoplasma. Then my younger son got it and his doctor didn't test him, but called it walking pneumonia. We spent the week in bed together watching television and sleeping. It was the following fall when he started football and had to run sprints that he began gasping for air.
That's my long-winded way of saying in adults who are in their 40s or older, it's a tough call to put the pieces together. You're right saying the cases are never cut and dry - less so in cases where it starts when you're a kid - but the possibility does exist. There have been many studies done on this in the pediatric arena, and the findings are the same as with adults. Well, if that's true, then it stands to reason that you can go untreated for a long long time, as I did, and still be treated at some point when you're an adult.
I'm glad you're willling to at least consider treating some people who may have asthma and be sick all the time. If a cold is never just a cold, but a sinus infection or bronchitis, or pneumonia, then that's a good indicator that more is going on. Of course in the case of sinus infections, you'd want to rule out some mechanical problem that may be the cause of infection when one is congested, but you already know this. If you consider it and decide that you'd be willing to treat some people, please drop me a line and we'll refer people to you. After further thought I realized there is Dr. Mirkin who is in your area, but he won't prescribe Azithromycin, so people end up on antibiotics for a LONG time. Because of that, I really don't feel comfortable referring people to him.
About blood test results - there have been a few (and I think Joy may be one) who did not have higher titers for either bacteria who still had their asthma resolved with antibiotics. One of them from asthmastory.com holds world records for marathons. She got really ill, developed asthma, tested negatively, and Dr. Wagshul treated her anyway. She's run all over the world - Siberia, the desert, etc. She was treated earlier this year. She just wrote me about ten days ago to say she raced in Scotland and had beaten her personal best, and the following weekend beat THAT personal best. So her asthma must be resolved, since she couldn't run while she had it.
So far we've seen many people who are nervous about their prescription plans - worried that their insurance won't cover the extended antibiotics - but nobody that I can recall has had their insurance refuse them. I know in my case I sent in the script for 39 - 250mgs Azithromycin tablets and they sent them right out to me for a whopping $10.00.
We DID, however, have one person whose pharmacist refused to fill it, saying he couldn't give her that many and she'd have to keep coming back for them each week. Why, I don't know.
> > CBI - if you're willing to treat people (or already > treating [quoted text clipped - 74 lines] > -- > CBI, MD CBI - 28 Jun 2004 14:20 GMT > <snip> I do want to say something about childhood asthma when one's > childhood was eons ago. <snip>
> I'd had asthma for so long, and because > the asthma didn't appear to be really related to any illness, and > because my son had exercise-induced asthma and he felt it could > be hereditary because of that. We were both hoping my asthma > would improve so it would be well managed and the quality of my > life would improve. <snip>
> That's my long-winded way of saying in adults who are in their > 40s or older, it's a tough call to put the pieces together. [quoted text clipped - 5 lines] > untreated for a long long time, as I did, and still be treated at > some point when you're an adult. I agree.
I know that there have been studies in children showing some measureof success and did not mean to imply that childhood onset or distant onset precluded benefiting from antibiotics. However, it does not fit with the "classic case" that has been described (the adult with sudden onset of symptoms after a URI). I suspect that once this thing is hashed out most of the true cases will not fit this classic scenario. Acknowledging that infection plays a role in some kids, perhaps in quite a few of them, is a long way from recommending that all kids with asthma be put on long term antibiotics.
> I'm glad you're willling to at least consider treating some > people who may have asthma and be sick all the time. If a cold > is never just a cold, but a sinus infection or bronchitis, or > pneumonia, then that's a good indicator that more is going on. Yes, but the clinical diagnosis of bacterial bronchitis and sinusitis is notoriously unreliable. Especially, when you consider that asthma can produce a cough with some sputum, and the propensity of some docs to throw antibiotics at all respiratory symptoms and secretions. There are many docs who consider it standard practice to start antibiotics with all exacerbations of asthma or COPD.
However, I am willing to do it in some cases. In Lissa's case, unless the story changed when I got the complete version, I would be inclined to treat - even if the blood tests were negative (for the reasons stated earlier). In MS's I would probably prefer to see if he remains stable on a conventional regimen and then place more weight on the testing if he does not.
> I realized there is Dr. Mirkin who is in your area, but > he won't prescribe Azithromycin, so people end up on antibiotics > for a LONG time. Because of that, I really don't feel > comfortable referring people to him. Just out of curiosity - why not? I mean - if he is accepting of the theory and willing to prescibe prolonged courses of antibiotics why be so adamant about which one? Is it that he is using a tetracycline (which has a long track record of long term use in acne and is cheap)?
> About blood test results - there have been a few (and I think Joy > may be one) who did not have higher titers for either bacteria > who still had their asthma resolved with antibiotics. That does not surprise me at all. As I said - I'm not at all sure that a suggestive history should take a back seat to a negative test. I often tell the residents and students to treat the patient and not the lab.
However, I hope you can understand that it is a bit disconcerting to treat based on a relatively new theory that has not been tested in large populations or endorsed by any major body without either the support of a particularly suggestive history (referring more to MS than Joy) or laboratory data.
> So far we've seen many people who are nervous about their > prescription plans - worried that their insurance won't cover the > extended antibiotics - but nobody that I can recall has had their > insurance refuse them. I know in my case I sent in the script > for 39 - 250mgs Azithromycin tablets and they sent them right out > to me for a whopping $10.00. I suspected that was the case. Zithromax is not all that expensive as branded antibiotics go and it is not normally a chronic med to I imagine that it stays below the radar of the prescription formulary guys. Careful of what you wish for - if this thing becomes common it may get their attention.
> We DID, however, have one person whose pharmacist refused to fill > it, saying he couldn't give her that many and she'd have to keep > coming back for them each week. Why, I don't know. To collect the co-pay each week. I also wondered aboutt hat possibility. I have been continually amazed at how the pharmacists can kind of make up their own rules and do what they want.
 Signature CBI, MD
NorthShoreCEO - 28 Jun 2004 15:07 GMT > > I realized there is Dr. Mirkin who is in your area, but > > he won't prescribe Azithromycin, so people end up on antibiotics [quoted text clipped - 5 lines] > so adamant about which one? Is it that he is using a tetracycline > (which has a long track record of long term use in acne and is cheap)? When you go on vacation, do you fly or do you take a train? When you moved into your new house, did you set up your closing for the earliest possible date, or did you schedule it six months after you could have closed? The end result is the same in the two examples of each scenario, yet the choices matter because people don't want to wait. I don't want to wait, you don't want to wait and people in poor health don't want to wait. If they can get there in three months, why make them go through a nine to twelve month course of antibiotics? Not to mention that people have to be on them for a lot longer to even determine whether or not the antibiotics are working.
I know some people don't do well on Azithromycin, and for them, Biaxin is a swell alternative. Biaxin eats my stomach alive, but others have no problem. Nine months to a year may not seem like a long time, but when you're suffering, it's the pits. It truly is like telling someone they may have their life given back to them, but instead of getting it back in three months, they'll have to wait nine months or more. You have no idea how this whole process screws up the head, by the way. The psychological ups and downs during the time you're on antibiotics is amazing, and the paranoia about germs that follows is certifiable. If you ever treat anyone for this with antibiotics, be aware that the emotional and psychological part of the process is going to be a challenge.
> That does not surprise me at all. As I said - I'm not at all sure that > a suggestive history should take a back seat to a negative test. I [quoted text clipped - 6 lines] > support of a particularly suggestive history (referring more to MS > than Joy) or laboratory data. Absolutely, and I don't think every asthmatic needs to be tested and treated. But for those who suffer like this, or those whose asthma began following a bad upper respiratory illness, it should be treated differently.
As for waiting until testing on large populations has been done - don't get me started on that note. Dr. Hahn can't get funding. National Jewish Medical and Research Center can, but instead of looking at other studies and using those as a starting point, or using data from doctors who have been treating this for years, they're ignoring all of that and reinventing the wheel by conducting studies in which they give asthmatics that test positively for either bacteria a six week course of Clarithromycin/Biaxin - which is not long enough to do anything. So far, and not surprisingly, all of their conclusions state that asthma was slightly improved for a time in asthmatics. Well, yeah, given the fact that they haven't treated for a long enough period to eradicate the bacteria, that would be the case. It scares me that the possibility exists that at some point, such studies will end with everyone concluding that slight temporary improvement is all one would hope for anyway.
Rheumatoid arthritis was linked to bacteria as early as 1939. Additional studies were done in 1955 that validated this. Here we are in 2004 and research is still being done linking RA to bacteria, but few doctors will treat patients with antibiotics. I just got a list of doctors here in Illinois who treat RA with antibiotics and if I use both hands to count them on this list, I'll have some fingers left over.
No offense to you or your profession, but if technology moved as quickly as modern research and medicine did, none of us would be online.
> To collect the co-pay each week. I also wondered aboutt hat > possibility. I have been continually amazed at how the pharmacists can > kind of make up their own rules and do what they want. OOOOHHHHHHH!!!!!! I hadn't thought of that. Boo them.
CBI - 28 Jun 2004 20:27 GMT > > > I realized there is Dr. Mirkin who is in your area, but > > > he won't prescribe Azithromycin, so people end up on [quoted text clipped - 23 lines] > them for a lot longer to even determine whether or not the > antibiotics are working. I think you misunderstood the question. I fully understand why you prefer azithromycin. It seems like the best choice to me as well.
I was asking why the doc is so adamant about choosing whatever other drug it is he prefers. I can understand a tetracycline - for the reasons listed above - but I would find being so adamant about Biaxin to be a bit strange.
> I know some people don't do well on Azithromycin, and for them, > Biaxin is a swell alternative. Biaxin eats my stomach alive, but > others have no problem. Then there is the drug interactions issue, the higher cost, the less convenient dosing schedule, the metalic taste......
I can see using it second line and even having some slight preference. I'm wondering why he would be so adamant though.
> As for waiting until testing on large populations has been done - > don't get me started on that note. Dr. Hahn can't get funding. That is a shame. I don't think everyone should have to wait until the studies are done but it would be a shame if they never get done, either due to a lack of patients because people are treated outside studies or a lack of funding.
> National > Jewish Medical and Research Center can, but instead of looking at [quoted text clipped - 4 lines] > either bacteria a six week course of Clarithromycin/Biaxin - > which is not long enough to do anything. I would have to wonder if it has to do with the source of the funding.
> No offense to you or your profession, but if technology moved as > quickly as modern research and medicine did, none of us would be > online. I think that depends greatly on the specifics of what you are referring to. I think just about everyone here would be shocked to learn that "modern" medicine has little data on what a normal temperature or heart rate is - we still really don't know and the little data that there is suggests that the numbers we are curently using are probably wrong. In other areas the advances have been breathtakingly rapid.
 Signature CBI, MD
NorthShoreCEO - 28 Jun 2004 22:19 GMT > I think you misunderstood the question. I fully understand why you > prefer azithromycin. It seems like the best choice to me as well. [quoted text clipped - 3 lines] > reasons listed above - but I would find being so adamant about Biaxin > to be a bit strange. Oh, sorry - I totally misread the question. We had a person ask Dr. Mirkin why he refuses to use Azithromycin, and he did at his next appointment, and this is what he posted:
"As I promised, I asked Dr. Mirkin when I saw him yesterday about why he gives Biaxin and not Zithromax. He said, that he also gives Zithromax but not for long term as Zithromax has not been approved by the Food and Drug Adminstration as a long term treatment. the most a doctor can give you of Zithromax at one time is 6 days according to the FDA."
Now I don't know if he really said this, or if this man misunderstood, but this also gave me great pause about referring people to him. Isn't the correct phrase that it's an unapproved use of an approved drug? And obviously doctors can, and do, prescribe for longer than six days. It almost makes me feel the way you feel about the pharmacist who said he couldn't fill the prescription for more than a week at a time.
> Then there is the drug interactions issue, the higher cost, the less > convenient dosing schedule, the metalic taste...... [quoted text clipped - 9 lines] > either due to a lack of patients because people are treated outside > studies or a lack of funding. National Jewish has done ongoing studies and I feel it's been a waste of time to repeat the same thing over again with the same six week round of Biaxin. I'm now trying to find a filthy rich high profile person who either suffers from asthma, or has a child who is suffering from asthma, who may be willing to take this on for some private funding. That's the only way this will get out there, because without funding to conduct larger studies, this isn't going to be accepted and as long as National Jewish is getting the funding, the results of the studies will probably not change.
> > National > > Jewish Medical and Research Center can, but instead of looking at [quoted text clipped - 6 lines] > > I would have to wonder if it has to do with the source of the funding. The manufacturers of Azithromycin have given some money for some small funding, but when it comes to the NIH, Dr. Hahn just can't get funding approval. He's been working with some people at U of WI on this, I believe, and they were just turned down a few months ago. Part of the problem is that he's a practitioner/researcher. If you were NIH, would you put your money into a practitioner/researcher or the number one asthma facility in the country? It just makes me mad that they ARE the number one asthma facility in the country, and they're approaching this the way they are. I'd much rather have them working with some of these doctors who have been treating patients. They have a wealth of information that's being ignored. I'm sure they think any contribution of theirs would be simply anecdotal, and therefore, meaningless.
> > No offense to you or your profession, but if technology moved as > > quickly as modern research and medicine did, none of us would be [quoted text clipped - 7 lines] > using are probably wrong. In other areas the advances have been > breathtakingly rapid. I really mean more in terms of research and the way the ball gets dropped for fifteen years at a time, only for them to start from square one all over again.
CBI - 29 Jun 2004 18:13 GMT > Oh, sorry - I totally misread the question. We had a person ask > Dr. Mirkin why he refuses to use Azithromycin, and he did at his [quoted text clipped - 6 lines] > treatment. the most a doctor can give you of Zithromax at one > time is 6 days according to the FDA." Well - I assume he means that it is approved for long term use for other indications since nothing is approved for any period of time for this (specifically at least- see below). Zithromax is a standard drug for long term use for treatment and prophylaxis of MAC (in severaly immunosuppressed pts) even if it does not have the offical FDA approval. In fact, it is profered to Biaxin by most clinitians due to the decreased drug interactions (a huge issue with HIV and transplant pts) and the improved tolerability.
A moredirect response to him would be to ask if he ever uses a drug for "off label" indications (which is impossible not to do and stil practice medicine)
Finally- Zithromax is FDA approved for treatment of mild to moderate pneumonia and other respiratory infections and specifically for the treatment of chlamydia and mycoplasma species. The PDR/FDA does not make any recommendations as to duration of therapy for any of these indications so there is a strong argument that the drug is FDA approved for this purpose.
> Now I don't know if he really said this, or if this man > misunderstood, but this also gave me great pause about referring > people to him. Isn't the correct phrase that it's an unapproved > use of an approved drug? Yes - the medical lingo would call it an "off label" use. Most people - and most docs - would be shocked to learn how many of the drugs are not approved for the indications they happily use them for. Getting FDA approval is expensive so if the drug is generic, the practice is already common (so no additional money will be made by getting it approved), or the condition is unusual there never will be FDA approval for it.
> And obviously doctors can, and do, > prescribe for longer than six days. It almost makes me feel the > way you feel about the pharmacist who said he couldn't fill the > prescription for more than a week at a time. Like I said above- Zithromax is FDA approved for pneumonia, bronchitis, and chlamydia and mycoplasma infections. There is no mention of length of therapy in the approval so I really don't see the issue. He might be confusing the approval to specifically market 5 and 3 day "paks" with the general indication for the infection.
> I'm sure they think any contribution of theirs would be > simply anecdotal, and therefore, meaningless. Anecdotal evidence should not be confused with being synonymous with evidence from a randomized trial. However, it is a good jumping off point when planning the trials. Actually, you almost need it since it will dictate your estimates of power/how large and long you need to go and warn you of many of the issues you are likely to face and need to account for.
> I really mean more in terms of research and the way the ball gets > dropped for fifteen years at a time, only for them to start from > square one all over again. Like I alluded to - sometimes it gets dropped - sometimes it is carried with spectacular success. One problem (probably the big problem) is that there is no consitant unifying authority that sets any kind of a rational agenda. Even at the CDC and NIH funding is done in a piecemeal fasion. One would think that if a small study was funded and showed promisinfg results that the larger study would be a no-brainer to get funded. Why else fund the small study in the first place? Similarly - one would think that if someone suggested a small study that the authority would point out that that work has been done and that the authors should build on it rather than duplicate it. That is what any rational being would do.
 Signature CBI, MD
NorthShoreCEO - 28 Jun 2004 14:24 GMT This is part of the post the marathon runner left on asthmastory.com in October of 2003. What she describes in the way of her illness is very typical.
".... in the past two years I have had pneumonia twice, bronchitis three times; severe flu w/horrible chest congestion; allergies that have gone from allergic to three things to 58 of 60 tested; chronic rhinitis/sinusitis with increasingly severe headaches; this year I was diagnosed with asthma and have been getting increasingly severe attacks and have responded only minimally to medications.
What is worse is that I am a marathon runner, and yes, I hold three world records for running marathons on all seven continents.... now, I cannot even run a 5K without having an attack. "
She was a patient of Dr. Wagshul who put her on an Azithromycin/Doxycycline combo and as I wrote yeserday, she just emailed me to tell me she'd run some marathons in Scotland and beat her personal best one week - and beat that best the following week.
People put asthmatics in this big bucket, when asthma in one person does NOT equal asthma in another. I know this is because asthma does have different causes. In some cases you'll find poorly managed asthma because the asthma is allergy-induced, and the not so bright person, or their not so bright family members won't give up pets - or wearing cologne - or eating certain food. For another group, it's this unresolved bacteria. Even other asthmatics are guilty of this, thinking that they lead an active life, so other asthmatics should do the same, and if they don't they're just lazy. Some doctors and family members, sick and tired of hearing about how sick and tired the asthmatic feels all the time, often lose their patience and accuse the person of being a hypochondriac.
The subset may be small, but it's a beaten down group that badly needs a break.
Joy - 28 Jun 2004 15:09 GMT Maureen,
Do me a favor. If someone in your group goes to one of the doctors, ask them to ask if those of us with C or M pneumonia caused asthma are contagious. Also, one person did post somewhere that when they saw the doctor who diagnosed them, he stated he could tell by their symptoms which people were more likely to be helped. I don't recall though which doc that was. Do you know? Do you know what he meant by that? Thanks!
Joy
> This is part of the post the marathon runner left on > asthmastory.com in October of 2003. What she describes in the [quoted text clipped - 38 lines] > The subset may be small, but it's a beaten down group that badly > needs a break. NorthShoreCEO - 28 Jun 2004 15:14 GMT Joy, I think that's been asked already, and I believe the answer was that it's not contagious unless it's a current, active infection.
It was Dr. Wagshul who told Amie, the marathon runner, that her symptoms and history were classic and he started her out right away on antibiotics, even before getting the test results back. I think when they did come back, they were negative, but I'd have to search through the old posts on asthmastory.com to find out for sure.
> Maureen, > [quoted text clipped - 6 lines] > > Joy Joy - 28 Jun 2004 15:38 GMT > Joy, I think that's been asked already, and I believe the answer > was that it's not [quoted text clipped - 9 lines] > asthmastory.com > to find out for sure. Great! Did she post her "classic" symptoms?
NorthShoreCEO - 28 Jun 2004 16:11 GMT I did in an earlier post today.
> > Joy, I think that's been asked already, and I believe the answer > > was that it's not [quoted text clipped - 11 lines] > > Great! Did she post her "classic" symptoms? Joy - 28 Jun 2004 16:55 GMT > I did in an earlier post today. > [quoted text clipped - 17 lines] > > > > Great! Did she post her "classic" symptoms? Are you saying that the people at asthmastory can agree that part of the defining symptoms are recurring bronchitis, tiredness, headache, sinusitis? I realize that not everyone has every symptom. But that does match my history/symptoms. Do you ever have someone who is cured who has none of these symptoms?
NorthShoreCEO - 28 Jun 2004 17:43 GMT > Are you saying that the people at asthmastory can agree that part of the > defining symptoms are recurring bronchitis, tiredness, headache, sinusitis? > I realize that not everyone has every symptom. But that does match my > history/symptoms. Do you ever have someone who is cured who has none of > these symptoms? I think they would agree that red flags include the following:
~asthma that began following a bad upper respiratory illness/infection ~asthma that is not well managed, despite them trying out a lot of meds/combinations of meds (this doesn't necessarily mean full blown asthma attacks, by the way - it can be constant shortness of breath or labored breathing) ~fatigue ~adult onset asthma ~the general feeling of not feeling well, even on good days ~colds that aren't normal colds but always end up with secondary infections, such as bronchitis, sinusitis, and pneumonia ~more bouts of illness than the average person ~coughing even when not sick - often a wet sounding cough in the chest ~all other possibilities have been ruled out, meaning you've had sinus surgery to correct any problems, or have no problems, and have had x-rays and other tests to rule out other problems with the lungs
People who don't struggle with the above generally aren't out there looking for help with their well-managed asthma, so no, I've never heard of someone being cured who didn't have those symptoms, only because I've never heard of them seeking a cure to begin with.
NorthShoreCEO - 28 Jun 2004 17:59 GMT I'm reposting what Amie wrote of her symptoms in October of 2003:
".... in the past two years I have had pneumonia twice, bronchitis three times; severe flu w/horrible chest congestion; allergies that have gone from allergic to three things to 58 of 60 tested; chronic rhinitis/sinusitis with increasingly severe headaches; this year I was diagnosed with asthma and have been getting increasingly severe attacks and have responded only minimally to medications.
What is worse is that I am a marathon runner, and yes, I hold three world records for running marathons on all seven continents.... now, I cannot even run a 5K without having an attack. "
All sinus/lung issues had been ruled out by the time she went to Dr. Wagshul. Look at the illnesses she had in a short period of time. That's not normal. It definitely signals something more is going on - and this is the important point that we keep.....or I keep forgetting to include. Not all asthmatics who are going through these symptoms have their asthma resolve following the antibiotic round. Those who suffer like this and don't have resolved asthma, can have improved asthma, so their asthma is well-managed and the quality of their life improves. We forget about the subset of true asthmatics who have also been exposed to one of the bacteria which worsened their condition. That's the group I thought I would be in when I went to see Dr. Hahn.
> > Are you saying that the people at asthmastory can agree that > part of the [quoted text clipped - 33 lines] > heard of someone being cured who didn't have those symptoms, only > because I've never heard of them seeking a cure to begin with. Joy - 29 Jun 2004 00:33 GMT Thanks Maureen,
I guess the kind of people who show up at asthmastory are the ones who are desperate enough to have researched the problem themselves. So you really can't tell based on the experiences of that group whether some of the milder asthmatics could be cured as well. How does Dr Hahn determine that more than 50% will be helped? Once he started treating asthmatics with antibiotics, he likely attracted the more severe asthmatics to his practice - people who would go to the effort to drive to see him because regular protocols were not working. National Jewish also. Or do you know if the research that lead him to that conclusion was not from his practice, but from a general population of asthmatics?
It is so hard to know whether to pursue finding a willing doc if you can't determine your likelihood of success - it takes a considerable effort to find one! So I was hoping through this discussion to give some of the readers of the newsgroup a more informed basis on which to make that decision. Whether it is worth that effort and if they should indeed take matters into their own hands. Do you get the impression from Dr Mirkin that ALL adult onset is due to an infection? That the ones who aren't cured have had the disease too long and remodeling is now the cause? Jim Quinlan told me that people with asthma for more than 10 years are not as likely to benefit from antibiotics. It would mean if you are adult onset, you should be more actively trying to get antibiotics because it may be too late if you wait for the studies. You see where I am going here.......
Joy
> I'm reposting what Amie wrote of her symptoms in October of 2003:
> >snip > > [quoted text clipped - 31 lines] > only > > because I've never heard of them seeking a cure to begin with. NorthShoreCEO - 29 Jun 2004 01:22 GMT > I guess the kind of people who show up at asthmastory are the ones who are > desperate enough to have researched the problem themselves. So you really > can't tell based on the experiences of that group whether some of the milder > asthmatics could be cured as well. Sure they can. My son was a mild asthmatic. He had exercise induced asthma that only required medication during sports where a lot of running was going on - basketball and football. He didn't need it during gymnastics, nor did he need it during baseball. He always complained that the advair and albuterol inhalers didn't help much. He was treated with a six week round of Azithromycin when our family doctor, seeing how my situation turned around, was willing to call Dr. Hahn and discuss his medical record, etc. He now pla
|
|