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Medical Forum / Diseases and Disorders / Sinusitis / November 2005undiagnosed breathing disorder/disease
November 3, 2005 To Whomever Can Help: My pastor has an undiagnosed breathing disorder/disease. He has had numerous tests including an open lung biopsy (Pittsburgh, PA) and a diaphragm function test (Cleveland Clinic, OH). No test has yielded any light on his condition and doctors are stumped. His condition began 1-1/2 to 2 years ago after having bronchitis which turned into pneumonia and was treated with antibiotics, but the symptoms seemed to persist and worsen. He now has a 30%-50% loss of function/capacity and seems to be experiencing a rapid deterioration of lung function. His family doctor told him that if his function continues to decline at this rate, he may not be able to stand up from a chair in about 9 months. A year ago, he ran daily and exercised regularly. Now, he has low to no tolerance for exercise of any kind. He can barely make it through two one hour church ceremonies without feeling totally exhausted. He says his doctors told him he has unexplained symptoms including: * 30%-50% loss of function * muscles around the lungs are loosing function, not the diaphragm * collapsed sacs in the lung * fluid in near the bottom of lung * scaring of the lung tissue * calcification in the lung > November 3, 2005 > [quoted text clipped - 4 lines] > diaphragm function test (Cleveland Clinic, OH). No test has yielded > any light on his condition and doctors are stumped. What is his ethnicity? > His condition began 1-1/2 to 2 years ago after having bronchitis which > turned into pneumonia and was treated with antibiotics, but the > symptoms seemed to persist and worsen. Does he have a persistent chronic cough? > He says his doctors told him he has unexplained symptoms including: > * 30%-50% loss of function [quoted text clipped - 3 lines] > * scaring of the lung tissue > * calcification in the lung Two possibilities: First, a low-level persistent infection. Has he been evaluated by an Infectious Disease specialist? Second, such rare lung diseases as pulmonary sarcoidosis or idiopathic pulmonary fibrosis. The inflammation from the bronchitis/pneumonia may have triggered something like that. I asked about your pastor's ethnicity because some rare lung diseases seem to afflict certain ethnic groups more than others.  SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. >> November 3, 2005 >> [quoted text clipped - 6 lines] > >What is his ethnicity? White. >> His condition began 1-1/2 to 2 years ago after having bronchitis which >> turned into pneumonia and was treated with antibiotics, but the >> symptoms seemed to persist and worsen. > >Does he have a persistent chronic cough? Maybe. I think he keeps it calm. >> He says his doctors told him he has unexplained symptoms including: >> * 30%-50% loss of function [quoted text clipped - 8 lines] >First, a low-level persistent infection. Has he been evaluated by an >Infectious Disease specialist? I don't think so. I think he should see an immune disorder specialist also. >Second, such rare lung diseases as pulmonary sarcoidosis or idiopathic >pulmonary fibrosis. The inflammation from the bronchitis/pneumonia may >have triggered something like that. I asked about your pastor's >ethnicity because some rare lung diseases seem to afflict certain ethnic >groups more than others. Thanks for your help! >>>November 3, 2005 >>> [quoted text clipped - 8 lines] > > White. I said ethnicity, not race. Please be more specific. What ethnic group? Irish-American? Italian-American? Eastern European descent? >>Two possibilities: >> [quoted text clipped - 11 lines] > > Thanks for your help! Some interstitial lung diseases that can cause fibrosis do have an autoimmune component. I agree with you about seeing an immunologist as well as a pulmonologist. But in my experience, some physicians who call themselves "immunologists" are just glorified allergists. You need a specialist who's experienced in immune system *disorders*. And that seems to be a subset of allergists. Your pastor needs to ask the right questions before choosing such a doctor. There is a Rare Lung Diseases Association (or something like that) here in America. You can probably google for them. SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. Here is the address of the Pulmonary fibrosis foundation. It might be a good contact. Pulmonary Fibrosis Foundation 1332 North Halsted Street Suite 201 Chicago, Illinois 60622 (312) 587-9272 fax (312) 587- 9273 for more information. You can post the symptoms and questions directly to National Jewish on medline's respiratory disorders and a nurse will answer the question and give possiblilties and point him in the right direction. You can find them at: http://www.medhelp.org/forums/RespiratoryDisorders/ It is hard to get the question posted. They only accept 2 a day. It is a good idea to type out the symptoms and questions and keep trying to get on. It is usually open around 8-9 a.m or around noon EST. It takes about 1-2 weeks to get an answer though. A visit to National Jewish would also be my suggestion. I would make an appointment as soon as possible. Their contact number is Patients or Potential Patients Contact our LUNG LINE directly at 1-800-222-LUNG (5864) Weekdays: 10:00 am - 6:30 pm Eastern time or via LUNG LINE e-mail lungline@njc.org In the meantime, he might get some of the following checked out. They are rare, but possibilities: Wegener's granulomatosus that usually affects the sinuses and the lungs, but sometimes only the lungs, but can rapidly progress to the kidneys. It can be treated if caught early. They do a test called ANCA. There is also a disease called Churg Strauss disorder that affects the lungs and one usually has a high level of IgE antibodies. These may be far fetched, but need to be diagnosed early. Also the loss of muscle function could point to a neurological condition. An appointment with a neurologist might be worthwhile too. Good luck. Kathyw > Here is the address of the Pulmonary fibrosis foundation. It might be > a good contact. [quoted text clipped - 36 lines] > loss of muscle function could point to a neurological condition. An > appointment with a neurologist might be worthwhile too. She said that her pastor had been to the Cleveland Clinic. Given the severity and unusual nature of his symptoms, I'm surprised they didn't do a full workup on such disorders. The Cleveland Clinic has a great reputation, and yet it seems they just let this patient go without investigating every possibility. SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. One must be seen by the right Department at Cleveland Clinic. He may have seen pulmonary specialists who are not familiar with his particular disease. He might consider the Cleveland Clinic Vasculitis Clinic to find out if it'a one of the autoimmune vasculitides. -- Bruce (WG '97) > She said that her pastor had been to the Cleveland Clinic. Given the > severity and unusual nature of his symptoms, I'm surprised they didn't > do a full workup on such disorders. The Cleveland Clinic has a great > reputation, and yet it seems they just let this patient go without > investigating every possibility. > One must be seen by the right Department at Cleveland Clinic. He may > have seen pulmonary specialists who are not familiar with his particular > disease. So those specialists just sent him home to suffer some more??? Rather than trying to refer him to other physicians who might be able to help??? This patient is very sick: * 30%-50% loss of breathing function * muscles around the lungs are losing function * collapsed sacs in the lung * fluid in near the bottom of lung * scarring of the lung tissue * calcification in the lung No physician should send a patient in such poor health home without making every attempt to diagnose the condition. Even if he has to refer the patient to many other physicians in the same hospital, or even refer the patient to other hospitals. SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. >She said that her pastor had been to the Cleveland Clinic. Given the >severity and unusual nature of his symptoms, I'm surprised they didn't >do a full workup on such disorders. The Cleveland Clinic has a great >reputation, and yet it seems they just let this patient go without >investigating every possibility. Perhaps it was on a referral from another doctor and they felt that they had only been asked to investigate a specific aspect, and that overall coordination lay with the referring doctor. I am only guessing here. Mayo has the best interdisciplinary approach to medicine in my opinion...... Don, You may be right about them only being called in to investigate a specific aspect. When I had the blastomyces cultured from my sinuses last fall, I was referred to an infectious disease doctor who treated that. Then when I had the stenotrophomonas cultured and still wasn't feeling well, he told me that he hadn't been called in to treat that so he refused to treat it. That's when I had to end up going to Atlanta to be treated because the ENT that did the cultures didn't communicate well with him. I got mad and made a scene. Now they all refuse to see me in the group, the only one in the area. They won't give me a reason. I have finally found someone closer to home than Atlanta, but still 2 hours away. This kind of thing is a shame. Whatever happened to the patient's well being. I hope this didn't happen in this man's case. Maybe they did look at all aspects, but the experiences I have had, I don't trust any of them anymore. This patient needs help now. Kathyw > Don, > [quoted text clipped - 10 lines] > Atlanta, but still 2 hours away. This kind of thing is a shame. > Whatever happened to the patient's well being. The specialists appear to have taken the interpretation of the term "specialist" to absurd levels. To many of them, you are NOT a "patient." You are just an upper respiratory tract, or a stomach, or whatever particular organ the specialist specializes in. Anything else is not their problem. I was at the Cleveland Clinic and the ENT there, Dr. Lanza, told me that while the ENT department is increasingly convinced that reflux plays a part in exacerbating sinusitis, their own Gastroenterology Department steadfastly refuses to consider it. And so Dr. Lanza admitted that the two departments are currently having a heated argument over this issue, while the patients go untreated. My own ENT here in the Boston area has told me that he too is becoming increasingly convinced that reflux plays a role in exacerbating sinusitis. In fact, he has found reflux in 100% of his child sinusitis patients and many of his adult patients, myself included. But he admitted to me that so far, he has been unable to find *any* gastroenterologists in the Boston area to refer his sinus patients to. Because they refuse to do Nissen fundoplication surgeries on patients whose main complaint is sinusitis. SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. >> Don, >> [quoted text clipped - 32 lines] >Because they refuse to do Nissen fundoplication surgeries on patients >whose main complaint is sinusitis. There is nothing new about the possibility of reflux causing or exacerbating sinusitis. http://www.medscape.com/viewprogram/3612_pnt Additionally, reflux can most often be remedied through medication without resorting to surgery. Boron >The specialists appear to have taken the interpretation of the term >"specialist" to absurd levels. To many of them, you are NOT a >"patient." You are just an upper respiratory tract, or a stomach, or >whatever particular organ the specialist specializes in. Anything else >is not their problem. True. However, in cases where the patient is referred by another doctor with a letter asking them to just do a specific thing, then the model is probably for them to do it and write a letter (or call) back to the referring doctor with the results and any suggestions for additional consultations . The referring doctor is supposed to have control of what specialists are seen. Where there is an HMO involved, the HMO may require prior approval from the gatekeeper for them to cross-refer to another specialist. Again, this may or may not apply in this specific case. I am just saying that we do not know exactly what theCleveland Clinic was asked to do.... >>First, a low-level persistent infection. Has he been evaluated by an >>Infectious Disease specialist? > > I don't think so. I think he should see an immune disorder specialist > also. One more thing. If your pastor is well enough to travel, he might consider visiting the National Jewish Medical and Research Center in Boulder CO. It's the last resort for lung disease in America. If they can't solve it, nobody can. If you go to their website, www.njc.org, you will see that they treat exactly the kinds of symptoms your pastor is suffering from. Including all sorts of autoimmune lung diseases, fibrotic lung diseases, the whole nine yards. That might be easier one-stop shopping than having your pastor shop around for a good immunologist here and a good pulmonologist there. SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. |
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