Talk Cancer

Question:

"Michael Roeper" <Roe…@attbi.com> wrote in message

news:On79a.318570$tq4.7218@sccrnsc01… – Hide quoted text — Show quoted text -> You know, I;’ not trying to be a jerk here but I just tuned my computer on > and saw some good activity under this "Interstetial Lung Disease" heading. > It really excited me as that’s what I’m struggling with right now, > struggling with and, evidently, losing the battle. Am now on oxygen 24 hours > a day. Can’t even hardly take a shower without it. > INSTEAD I GET THIS CHILDISH DRIVELTHAT SOUNDS LIKE A COUPLE OF 4 YEAR OLDS > FIGHTING IN A SANDBOX. > My God! What’s the matter with you people??? > I’m outa here. I ‘ll see if I can find answers to my questions elsewhere. I > saw this stupid childish in-fighting destroy another group that I was > involved with last year. Is there a moderated group for Lupus. The Doc’s > tell me I don’t need stress. You’d think……………aww! forget it. > Jeeze! This is really, really stupid. > (And, if I’m over-reacting, I apologize in advance)…

Apology accepted … http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query_old?db=m_r Type in .. ‘interstitial lung disease and iron’ .. then get back .. The body would normally ‘mine’ this iron out but when the body is preoccupied or either has no resources to do it .. the iron remains and destroys tissue. Fibrosis of the lung .. is the same as  fibrosis of the liver and this tissue fibrosis has been shown to be reversed in the liver by iron reduction. THAT .. reversal of cirrhosis .. has never been heard of .. Believe it or not .. Who loves ya. Tom — Jesus Was A Vegetarian! http://jesuswasavegetarian.7h.com Man Is A Herbivore! http://pages.ivillage.com/ironjustice/manisaherbivore DEAD PEOPLE WALKING http://pages.ivillage.com/ironjustice/deadpeoplewalking

Response:

Hawki63 <hawk…@aol.comnospam> wrote in message

news:20030223232815.11499.00000157@mb-fw.aol.com… > >I suppose the original study was COMPLETED BY A BUNCH OF STUPID GOOFS .. too > >.. eh .. > could well be…being published does not imply credibility,,,as noted in > repeated evidence that "studies"  can and have been falsified….

So what you are saying here is .. " no matter WHAT you post .. Tom .. I am going to come onto the post .. and by hell or high water .. if there is nothing I can find wrong with the article / study .. I am simply going to say .. there is a possibility the article / study was falsified .. !" Is that how I understand the above ..? Hawki is supposed to be a member of the medical profession. Is it any wonder the medical profession is as mistrusted as it is ..? Nope .. Who loves ya. Tom — Jesus Was A Vegetarian! http://jesuswasavegetarian.7h.com Man Is A Herbivore! http://pages.ivillage.com/ironjustice/manisaherbivore

Response:

Shelagh wrote: > "J" <PineyW…@example.com> wrote in message >  > Where’s your hernia Sheila? > > Front or back? > Front actually…. from my navel it is about 2 inches down and 2 inches > right… also along a vertical incision (from my navel down to my pubic > bone) there are a few ‘richter’ hernias -which are small buttonhole > tears – that the muscle and fat can pop through then get strangled and > are painful that will be fixed too… the incision is a weak one cause > it was opened twice emergency style for C-section and then > appendectomy.. and when they cut vertically and in a hurry it never > heals as well as a small bikini horizontal one does (never had one of > those!<g>).

oh I see, Thanks Shelagh, that is the groin area, sort of. (partial enterocele, or ‘Richter’s hernia’ ) Now don’t laugh if laughing causes you pain, but when I searched "Richter hernia", apparently Weird Al Yankovic, wrote a song about hernias <g>) I did have CT scan(s) so guess I don’t have hernias. Hope they find a hospital bed soon so they can get these fixed up for you. Hugs J

Response:

You know, I;’ not trying to be a jerk here but I just tuned my computer on and saw some good activity under this "Interstetial Lung Disease" heading. It really excited me as that’s what I’m struggling with right now, struggling with and, evidently, losing the battle. Am now on oxygen 24 hours a day. Can’t even hardly take a shower without it. INSTEAD I GET THIS CHILDISH DRIVELTHAT SOUNDS LIKE A COUPLE OF 4 YEAR OLDS FIGHTING IN A SANDBOX. My God! What’s the matter with you people??? I’m outa here. I ‘ll see if I can find answers to my questions elsewhere. I saw this stupid childish in-fighting destroy another group that I was involved with last year. Is there a moderated group for Lupus. The Doc’s tell me I don’t need stress. You’d think……………aww! forget it. Jeeze! This is really, really stupid. (And, if I’m over-reacting, I apologize in advance)… Michael Roeper Portland, Oregon "ironjustice" <thenn…@telusplanet.net> wrote in message

news:bIh6a.62704$9K5.2868427@news0.telusplanet.net… – Hide quoted text — Show quoted text -> Hawki63 <hawk…@aol.comnospam> wrote in message > news:20030223232915.11499.00000158@mb-fw.aol.com… > > >She just attempts to  make darn sure .. the original poster doesn’t take > any > > >notice .. > > Actually I would hope that the original poster availed herself of > excellent > > medical care,,and up to date knowledge.. > I suppose then you would be advising them to STAY THE HELL AWAY FROM YOU .. > then eh .. > How long HAS it been known aminoglycosides leave pinball wizards .. eh .. > Not long enough for you .. > Who loves ya. > Tom > — > Jesus Was A Vegetarian! http://jesuswasavegetarian.7h.com > Man Is A Herbivore! http://pages.ivillage.com/ironjustice/manisaherbivore

Response:

Shelagh wrote: > FWIW, I  have COPD and it often feels like pneumonia and in fact, the > doc has called it a type of pneumonitis ….  or interstitial > inflammation ongoing -not viral in nature …. > I have use of a steroid inhaler which helps and I don’t lie flat at > night due to induced coughing…. (got a hernia from that and am still > awaiting a bed to get it ‘fixed’)…

Where’s your hernia Sheila? Front or back? I could "swear" almost that I have one.  Started when my back went out and "exposures" and severe "heaving" to get my breath /oxygen on/off for months (till the landlady taped up the pipes). I think hernias can occur anywhere, but my doctor only seems to know how to check for the standard pelvic ones. I can’t lay on my right side because of induced coughing, some nights are worse, some better. It feels like a tendon across (criss-crossing my back) is pulling from my left side.  My doctor says it’s just a "more developed" muscle on the left side that looks swollen but when Itry to lie on my back on that "lump", I start coughing, so just wondering where your hernia is (please) ? Hugs J

Response:

BJ.. For WG or Churg-Strauss, the following might be done for diagnosis: Blood tests:  CRP, ESR, cANCA, pANCA, anti-PR-3, anti-MPO, (if possible IL-6) Urine tests:  Microscopic, usual screens, creatinine Scope tests:  Trachea, bronchii For other autoimmune vasculitides there may be other tests, I simply don’t know. You were wise not to have the open lung biopsy.  It is major surgery, very invasive, and too often not positive for WG. You could look at my web page (address below), but I’m not medically trained so nothing I say there or here is to be considered medical advice. Bruce  pws.chartermi.net/~blader

Response:

Shelagh <tidering…@shaw.ca> wrote in message

news:_v86a.310243$sV3.9988814@news3.calgary.shaw.ca… > "Michael Roeper"  wrote in message > > Part of my Lupus is a bad case of  Interstitial Lung Disease (ILD). > Anyone else have to mess with > > this crap? > FWIW, I  have COPD and it often feels like pneumonia and in fact, the > doc has called it a type of pneumonitis ….  or interstitial > inflammation ongoing -not viral in nature

They have shown erythrocytosis in COPD and also have shown by the reduction of red blood cell mass leads to : Significant increase in mean workload , the duration of exercise,  the maximal oxygen consumption, the maximal carbon dioxide production, and the ventilation at maximal exercise . : Am J Med 1983 Mar;74(3):415-20 Related Articles, Links Improved exercise tolerance of the polycythemic lung patient following phlebotomy. Chetty KG, Brown SE, Light RW. The present study evaluated the effects of therapeutic phlebotomy on the exercise tolerance and the maximal carbon dioxide output of polycythemic patients with chronic obstructive pulmonary disease. Fifteen maximal exercise studies were performed before and after phlebotomy in patients with moderate to severe chronic obstructive pulmonary disease (mean forced expiratory volume in one second [FEV1]= 970 ml). After phlebotomy there were no significant differences in pulmonary function, blood gases, oxygen consumption, or carbon dioxide production at rest. However, after phlebotomy there was a significant increase in the exercise tolerance of the patients. The mean workload, the duration of exercise, the maximal oxygen consumption, the maximal carbon dioxide production, and the ventilation at maximal exercise all increased significantly. The improved exercise tolerance after phlebotomy appeared due to an increased cardiac output generated mainly through an increased stroke volume. We hypothesize that the increased stroke volume was due to a higher ejection fraction of the right ventricle secondary to a lower pulmonary artery pressure. This study provides further evidence that patients with chronic obstructive pulmonary disease who have polycythemia benefit by therapeutic interventions that maintain their hematocrits below 55 percent. PMID: 6402930 [PubMed - indexed for MEDLINE] ——————————————————— Who loves ya. Tom — Jesus Was A Vegetarian! http://jesuswasavegetarian.7h.com Man Is A Herbivore! http://pages.ivillage.com/ironjustice/manisaherbivore

Response:

Hawki63 <hawk…@aol.comnospam> wrote in message

news:20030223133623.12575.00000065@mb-cq.aol.com… > >I have come to the conclusion the free radicals found in those with Lupus .. > >are the result of the destruction of red blood cells. > >Erythrocytosis. > Erythrocytosis is NOT the destruction of RBC,,,but an INCREASED production of > them(so I don’t see the connection with this person’s problems)

YOU .. wouldn’t .. You don’t even know antibiotics deafen people.. so what is YOUR opinion .. really .. worth .. ? You are a stalker .. PROVEN .. admitted .. which makes you a .. loon .. > > idiopathic pulmonary fibrosis. > Idiopathic means "we don’t know what caused it" > Pulmonary fibrosis and interstitial lung disease are not necessarily > interchangeable terms..

Who cares whether it is ‘NECESSARILY’ .. interchangeable. Does the original poster .. care ..? He is looking for any kind of .. clue .. and here YOU are again .. attempting to have someone NOT look into an avenue .. of possible .. help. As stated by me .. many times .. you don’t give a crap about nobody. Attempting to steer someone away from a possible avenue in which his coughing up a lung may NOT be in his future. You are simply a lying , abusive , stalking .. loser. And ANYONE who listens to ANYTHING you say is in for the ride of their lives. You steer people away from PROVEN therapy which is SHOWN to reduce the morphine type pain from 10 x 1 .. You are a discredit to the medical profession and should have your license and name struck from every register in the world. > Fibrosis CAN  be due to occupational exposure,,,but this would take a long > time..and sounds like you have a quick onset…so one would have to consider > OTHER causes ….such as Hamman-Rich syndrome, or sarcoidosis…

And this .. advice .. should be taken with .. a GOOD shot of rum ..  because THAT is ALL the relief you will get .. and ONLY that by listening to this sick , stupid , lying , stalking , abusive .. clown. Ask her what she is doing .. here. Following my posts. Any man in his right mind .. and SHE doesn’t like this FACT one bit .. would maybe listen to someone who has NOW been shown to be pushing a plan which has NOW been recommended in the treatment of MILLIONS and MILLIONS of people. What is HER .. ‘claim to fame’ ..? She says she has NEVER administered an aminoglycoside antibiotic WHEN aminoglycoside antibiotics have been used by EVERY medical practitioner in the world. Thusly .. AGAIN .. proving the statement and PROVEN fact .. she is NOT above LYING to attempt to make herself appear to be .. MORE .. than what she actually IS. A lying , abusive . stalking , dangerous .. clown. With a headache .. of  which she .. just .. can’t .. rid .. herself Who loves ya. Tom — Jesus Was A Vegetarian! http://jesuswasavegetarian.7h.com Man Is A Herbivore! http://pages.ivillage.com/ironjustice/manisaherbivore

Response:

I suggest any of you who wants the skinny of this "loon" should visit alt.support.headaches-migraine for an uptodate expose of Tommy Terrific… thread  "too many ironjustice/doe etc" posts.. enuf said.. rb ps > would >maybe listen to someone who has NOW been shown to be pushing a plan which >has NOW been recommended in the treatment of MILLIONS and MILLIONS of >people.

LOL LOL and yeah..he also claims to have a Nobel Prize..do a google using those keywords >She says she has NEVER administered an aminoglycoside antibiotic WHEN >aminoglycoside antibiotics have been used by EVERY medical practitioner in >the world.

hmmm…and I never have >With a headache .. of  which she .. just .. can’t .. rid .. herself

and that headache is named Tommy/doegirl Hawki

Response:

>: Am J Med 1983 Mar;74(3):415-20 Related Articles, Links

hmmm…20 year old article >Fifteen maximal

yeah…15…"huge sample size" rb again….a google search on this guy… use "ironjustice" ….watch…@nucleus.com and you can read for a week.. find out his Nobel Prize and how he is curing disease…great fun reading.. Hawki

Response:

"J" <PineyW…@example.com> wrote in message

 > Where’s your hernia Sheila? > Front or back?

Front actually…. from my navel it is about 2 inches down and 2 inches right… also along a vertical incision (from my navel down to my pubic bone) there are a few ‘richter’ hernias -which are small buttonhole tears – that the muscle and fat can pop through then get strangled and are painful that will be fixed too… the incision is a weak one cause it was opened twice emergency style for C-section and then appendectomy.. and when they cut vertically and in a hurry it never heals as well as a small bikini horizontal one does (never had one of those!<g>). > I think hernias can occur anywhere, but my doctor only seems to know how to > check for the standard pelvic ones. > I can’t lay on my right side because of induced coughing, some nights are > worse, some better. It feels like a tendon across (criss-crossing my back) > is pulling from my left side.  My doctor says it’s just a "more developed" > muscle on the left side that looks swollen but when Itry to lie on my back > on that "lump", I start coughing,

that sounds like so much pain!.. why on earth doesn’t your doctor refer you to someone who can help you with what is going on if he can’t?…. it seems to me that there is something happening that is more than an overdeveloped muscle?! good grief…. get a referral to an internist and get a ct scan… they are going to scan me to make sure they have the whole picture prior to surgery.. so no tears or rips are left … they are so uncomfortable and the coughing makes them worse! Good luck J! Don’t just leave it alone.. try to get a new look  at it with a new set of eyes…. sometimes it can make all the difference whether or not it is a herniated whatever! Hugs from Shelagh

Response:

Hawki63 <hawk…@aol.comnospam> wrote in message

news:20030223203857.11499.00000138@mb-fw.aol.com… > >: Am J Med 1983 Mar;74(3):415-20 Related Articles, Links > hmmm…20 year old article

What did I tell ya .. She doesn’t .. care .. whether or not other studies confirm this .. She just attempts to  make darn sure .. the original poster doesn’t take any notice .. What the hell .. who is HE .. anyway .. Eh .. hawki .. > >Fifteen maximal > yeah…15…"huge sample size

I suppose the original study was COMPLETED BY A BUNCH OF STUPID GOOFS .. too .. eh .. Who loves ya. Tom — Jesus Was A Vegetarian! http://jesuswasavegetarian.7h.com Man Is A Herbivore! http://pages.ivillage.com/ironjustice/manisaherbivore

Response:

>She doesn’t .. care .. whether or not other studies confirm this ..

somehow if there are confirmative studies..you would have posted them more to the point….medicine changes soooo fast that 20 year studies are outdated and MUST be updated Hawki

Response:

>I suppose the original study was COMPLETED BY A BUNCH OF STUPID GOOFS .. too >.. eh ..

could well be…being published does not imply credibility,,,as noted in repeated evidence that "studies"  can and have been falsified…. this you would understand if you understood the scientific process… eh Tom?? rb Hawki

Response:

>She just attempts to  make darn sure .. the original poster doesn’t take any >notice ..

Actually I would hope that the original poster availed herself of excellent medical care,,and up to date knowledge.. rb Hawki

Response:

Hawki63 <hawk…@aol.comnospam> wrote in message

news:20030223232915.11499.00000158@mb-fw.aol.com… > >She just attempts to  make darn sure .. the original poster doesn’t take any > >notice .. > Actually I would hope that the original poster availed herself of excellent > medical care,,and up to date knowledge..

I suppose then you would be advising them to STAY THE HELL AWAY FROM YOU .. then eh .. How long HAS it been known aminoglycosides leave pinball wizards .. eh .. Not long enough for you .. Who loves ya. Tom — Jesus Was A Vegetarian! http://jesuswasavegetarian.7h.com Man Is A Herbivore! http://pages.ivillage.com/ironjustice/manisaherbivore

Response:

Hawki63 <hawk…@aol.comnospam> wrote in message

news:20030223232510.11499.00000156@mb-fw.aol.com… > >She doesn’t .. care .. whether or not other studies confirm this .. > somehow if there are confirmative studies..you would have posted them

No .. it is just that YOU .. don’t really care one way or another .. Since YOU are the one who runs around waving her .. ‘nurses practitioner’ .. sig around .. you should maybe do some homework before you tell a person not to look into a treatment. But .. you don’t REALLY care .. do ya .. Just your own personal .. agenda .. Better look closely .. BEFORE you start badmouthing this study .. too .. Simply because .. some people might REALLY begin to catch on to what you are all about .. <<snip>> Post-phlebotomy the maximal oxygen consumption increased from 1.09 +/- 0.34 L/min to 1.26 +/- 0.43 L/min (p less than 0.05) and the maximum workload increased from 56.5 +/- 32.6 watts to 74.5 +/- 23.4 watts (p less than 0.05). <<snip>> Chest 1990 Nov;98(5):1073-7 Related Articles, Links Exercise performance of polycythemic chronic obstructive pulmonary disease patients. Effect of phlebotomies. Chetty KG, Light RW, Stansbury DW, Milne N. Department of Medicine, VA Medical Center, Long Beach, CA 90822. The purpose of this study was to determine the effects of phlebotomy on the exercise tolerance and right and left ventricular ejection fraction of polycythemic patients with chronic obstructive pulmonary disease. Ten patients with COPD (mean FEV1 = 1.32 +/- 0.55 L) and polycythemia (mean Hct = 62 +/- 3 percent) were studied before and after their hematocrits had been reduced to approximately 50 percent. Post-phlebotomy the maximal oxygen consumption increased from 1.09 +/- 0.34 L/min to 1.26 +/- 0.43 L/min (p less than 0.05) and the maximum workload increased from 56.5 +/- 32.6 watts to 74.5 +/- 23.4 watts (p less than 0.05). The increase in the exercise tolerance appeared to be primarily due to an increased cardiac output at Emax. There was no relationship between the increases in the upright exercise capacity and changes in the supine ejection fractions of the right or left ventricular either at rest or during exercise. PMID: 2225946 [PubMed - indexed for MEDLINE] ————————————————————————— – —-  <<snip>> Significant increase in exercise tolerance and maximal oxygen uptake at peak exercise, with significant reduction in mean systemic BP, were demonstrated <<snip>> 1: J Thorac Imaging 1990 Jul;5(3):68-72 Related Articles, Links Exercise-induced changes in left ventricular function after phlebotomy in patients with polycythemic COPD. Milne N, Light RW, Chetty KG. Nuclear Medicine Service, Veterans Affairs Medical Center, Long Beach, California 90822. The exercise capacity of polycythemic COPD patients has been shown to improve after phlebotomy, possibly because of reduction of ventricular afterload by decreased blood viscosity, resulting in increased cardiac output. Ten patients with polycythemic COPD and mean hematocrit 62% were studied at rest and during exercise before and after reduction of mean hematocrit to 50% by repeated phlebotomy. Pulmonary function was evaluated by physiologic exercise testing on a bicycle ergometer. Cardiac function was evaluated by rest and exercise RNVG. Significant increase in exercise tolerance and maximal oxygen uptake at peak exercise, with significant reduction in mean systemic BP, were demonstrated. Ejection fractions did not change, but dV/dt for ejection from the left ventricle at peak exercise improved significantly. Mean SV counts, ESV counts, and EDV counts were measured and the fractional increase with exercise compared for prephlebotomy and postphlebotomy, assuming that resting volumes would not change. ESV counts and EDV counts were both proportionately, though not significantly, reduced postphlebotomy. The data tend to support the hypothesis that the afterload on the left ventricle is reduced, with resulting improved myocardial contractility and left ventricular function. Improved peripheral oxygen uptake may also be a factor. PMID: 2362307 [PubMed - indexed for MEDLINE] This is the medical professions .. alternative to phlebotomy . Drugs .. theophylline .. Theophylline lowers the red blood cells .. it halts the production of erythropoietin .. and THAT halts the production of red blood cells.. leaving .. fewer red blood cells. Voila .. glorified .. phlebotomy 1: Arch Intern Med 1997 Jul 14;157(13):1474-8 Related Articles, Links Effect of theophylline on erythrocytosis in chronic obstructive pulmonary disease. Oren R, Beeri M, Hubert A, Kramer MR, Matzner Y. Department of Internal Medicine, Hadassah University Hospital, Mount Scopas, Israel. BACKGROUND: Patients with chronic obstructive pulmonary disease (COPD) tend to develop secondary erythrocytosis to compensate for their chronic hypoxia. Theophylline has recently been shown to reduce hematocrit and erythropoietin blood levels in normal subjects and in patients with erythrocytosis after renal transplantation. OBJECTIVE: To determine whether theophylline may be used to lower the hematocrit in patients with COPD. METHODS: Two hundred four patients with COPD were studied retrospectively and 10 patients prospectively (8 starting treatment with the drug [group 1] and 2 who suspended its long-term use [group 2]) for the correlation between theophylline therapy and hematocrit and erythropoietin level. RESULTS: In the patients studied retrospectively, lower hematocrits were found in the theophylline-treated than in the untreated patients (0.43 +/- 0.006 vs 0.46 +/- 0.007, respectively; P < .002). Twelve untreated patients and 2 of those treated with theophylline had hematocrits above 52%. Oxygen saturation levels were similar in both groups, and exclusion of patients with oxygen saturation lower than 88% did not change the pattern, suggesting that the effect of theophylline could not be entirely explained by improved oxygen availability. Seven of the 8 patients studied prospectively in group 1 (P < .02) and the 2 patients in group 2 showed inverse correlations between hematocrits and theophylline administration. A similar pattern was observed with serum erythropoietin levels in 5 of 7 patients studied. The effects were reproducible on rechallenge in 3 of the 4 patients in group 1 and the 2 patients in group 2. CONCLUSIONS: Theophylline may have a beneficial effect in treatment and prevention of erythrocytosis in patients with COPD. PMID: 9224226 [PubMed - indexed for MEDLINE] Who loves ya. Tom — Jesus Was A Vegetarian! http://jesuswasavegetarian.7h.com Man Is A Herbivore! http://pages.ivillage.com/ironjustice/manisaherbivore

Response:

Hi Michael, I looked in the D. Wallace book, and could find little about ILD. He says it occurs in 10-20% of lupus patients, and it is treated with moderate doses of steriods.He states that it rarely leads to respitory failure, but causes rapid, shallow breathing, and decreased stamina. It also causes scars in the lungs. I don’t think I have it, but am not really sure. I had a lung nodule appear suddenly during my last big flare. I had difficulty breathing, and had to sit up in a chair, since lying down made it worse. The nodule healed, creating a scar. My last follow up xray suddenly showed COPD. I am not convinced that is what it is. I wonder if it is actually ILD. I don’t know of anyone of the NG that has it. It is hard to keep track of everyone though, so I could be wrong. I was wrong once before, I think. <g> I do hope you get some replies. It is nice to talk to someone who is living with the same problem. BJ-Sk. Canada "Michael Roeper" <Roe…@attbi.com> wrote in message

news:%uZ5a.204346$iG3.24197@sccrnsc02… – Hide quoted text — Show quoted text -> Part of my Lupus is a bad case of  Interstitial Lung Disease (ILD). Within a > month of diagnosis of the ILD using high res CT scans, I went from kind of a > bad case to real worse. Ended up in the hospital with Oxygen Saturation > numbers in the mid 60’s (88 or below requires pt to be oxygen dependend). I > don’t believe that ILD is a normal part of most of your Lupus symptoms but > it’s a big part of mine. I haven’t read a lot about it here. > Went on 4 ltrs of oxygen in the hospitral for 4 days which brought the oxy > sat numbers up to 78. That’s why the 60mg Pred (now 40), trying to get the > ILD to reverse itself. The Doc’s had not expected such a huge case of ILD so > fast on someone so young (48). Scared them and me. People die from this, I > guess. > Have had to buy a pulse oximeter machine ($750.) so I can tesst it at home. > Problem is, the ILD symptoms are almost identical to my history of 4 – 5 > major episodes in the past 16 months of of blood clots (DVT’s) and Pulmonary > Embolisms (PE’s). Hard to tell the difference.Anyone else have to mess with > this crap? > I’m real tired. > Michael Roeper

Response:

For what it’s worth, nodules in the lung and difficulty with shortness of breath could be an autoimmune vasculitis such as Churg-Strauss syndrom or Wegener’s granulomatosis.  It might be worth getting checked for those.  Also, lupus sometimes results in vasculitis as it’s unfortunately possible to have more than one autoimmune disease. Discuss with your rheumy and pulomonologist. Bruce

Response:

Hi Bruce, How would that determination be made? They could not do a needle biopsy on my nodule. It was positioned too close to a major heart artery. They wanted to do an open biopsy, but I refused. The follow up CT showed a scar where the nodule had healed. My last follow up did not show any more nodules, but it showed COPD for the first time. That finding seemed odd to me, since there was no evidence of that before. BJ-Sk. Canada "blader" <bla…@chartermi.net> wrote in message

news:3E58F58D.5080403@chartermi.net… – Hide quoted text — Show quoted text -> For what it’s worth, nodules in the lung and difficulty with shortness > of breath could be an autoimmune vasculitis such as Churg-Strauss > syndrom or Wegener’s granulomatosis.  It might be worth getting checked > for those.  Also, lupus sometimes results in vasculitis as it’s > unfortunately possible to have more than one autoimmune disease. > Discuss with your rheumy and pulomonologist. > Bruce

Response:

"Michael Roeper"  wrote in message > Part of my Lupus is a bad case of  Interstitial Lung Disease (ILD).

Anyone else have to mess with > this crap?

FWIW, I  have COPD and it often feels like pneumonia and in fact, the doc has called it a type of pneumonitis ….  or interstitial inflammation ongoing -not viral in nature …. I have use of a steroid inhaler which helps and I don’t lie flat at night due to induced coughing…. (got a hernia from that and am still awaiting a bed to get it ‘fixed’)… Anyway… HTH, (see the link),  with your questions, it looks like an informative site. http://www.vh.org/adult/patient/internalmedicine/interstitiallung/ild1.h tml#E The name which is used to classify the type of lung disease you have is interstitial pulmonary fibrosis. There are several diseases in which the end result of the disease process is scarring of the lungs, or interstitial pulmonary fibrosis. The diseases which fit this description are numerous and we have chosen only a few to describe in detail in this booklet. In all of the diseases characterized by interstitial pulmonary fibrosis, inflammation is the initial event which occurs in the lung. Inflammation is simply a collection of white blood cells. In an infection, the white blood cells kill bacteria by powerful substances they possess. In this manner, the body is helped by inflammation. However, white blood cells can, in some instances, damage normal tissue also, and this then results in fibrosis or scarring. The main goal of therapy in this disease is to arrest the fibrosis or lung scarring process. Again, prednisone is the drug used to do this. The same type of lung function tests, bronchoscopy with lavage and chest x-ray tests should be done if you have been diagnosed as having interstitial lung disease associated with RA. Soft Hugs from Shelagh http://continue.to/lupus

Response:

>I have come to the conclusion the free radicals found in those with Lupus .. >are the result of the destruction of red blood cells. >Erythrocytosis.

Erythrocytosis is NOT the destruction of RBC,,,but an INCREASED  production of them(so I don’t see the connection with this person’s problems) > idiopathic pulmonary fibrosis.

Idiopathic means "we don’t know what caused it" Pulmonary fibrosis and interstitial lung disease are not necessarily interchangeable terms.. Fibrosis CAN  be due to occupational exposure,,,but this would take a long time..and sounds like you have a quick onset…so one would have to consider OTHER causes ….such as Hamman-Rich syndrome, or sarcoidosis… Does require an accurate diagnosis to determine best course of treatment… good luck rb Hawki

Response:

Part of my Lupus is a bad case of  Interstitial Lung Disease (ILD). Within a month of diagnosis of the ILD using high res CT scans, I went from kind of a bad case to real worse. Ended up in the hospital with Oxygen Saturation numbers in the mid 60’s (88 or below requires pt to be oxygen dependend). I don’t believe that ILD is a normal part of most of your Lupus symptoms but it’s a big part of mine. I haven’t read a lot about it here. Went on 4 ltrs of oxygen in the hospitral for 4 days which brought the oxy sat numbers up to 78. That’s why the 60mg Pred (now 40), trying to get the ILD to reverse itself. The Doc’s had not expected such a huge case of ILD so fast on someone so young (48). Scared them and me. People die from this, I guess. Have had to buy a pulse oximeter machine ($750.) so I can tesst it at home. Problem is, the ILD symptoms are almost identical to my history of 4 – 5 major episodes in the past 16 months of of blood clots (DVT’s) and Pulmonary Embolisms (PE’s). Hard to tell the difference.Anyone else have to mess with this crap? I’m real tired. Michael Roeper

Response:

Michael Roeper <Roe…@attbi.com> wrote in message

news:%uZ5a.204346$iG3.24197@sccrnsc02… > Part of my Lupus is a bad case of  Interstitial Lung Disease (ILD). Within a > month of diagnosis of the ILD using high res CT scans, I went from kind of a > bad case to real worse. Ended up in the hospital with Oxygen Saturation > numbers in the mid 60’s (88 or below requires pt to be oxygen dependend). I > don’t believe that ILD is a normal part of most of your Lupus symptoms but > it’s a big part of mine. I haven’t read a lot about it here.

It seems iron causes the above .. but .. any articles you will find seem to point to the fact they get the iron from welding fumes , pollution .. etc. I have come to the conclusion the free radicals found in those with Lupus .. are the result of the destruction of red blood cells. Erythrocytosis. <<snip>> Thus, lipid peroxidation appears to be increased in patients with IPF and is associated with an increase in desferrioxamine-chelatable iron levels <<snip>> Am J Respir Crit Care Med 1996 Jun;153(6 Pt 1):1918-23 Serum indicators of free radical activity in idiopathic pulmonary fibrosis. Jack CI, Jackson MJ, Johnston ID, Hind CR The University Department of Medicine, University of Liverpool, United Kingdom. Serum levels of free radical activity were measured in 37 patients with idiopathic pulmonary fibrosis (IPF) and 16 control subjects. Three assays used were (1) simultaneously measured levels of the 9,11-diene conjugate of linoleic acid and 9,12-linoleic acid expressed as a percent molar ratio (%MR), a measure of free-radical-mediated lipid peroxidation; (2) thiobarbituric acid reactive substances (TBARS), one of which is malondialdehyde; (3) desferrioxamine-chelatable iron assay, a measure of the potential iron available to catalyze free radical generation. Mean %MR, TBARS and desferrioxamine-chelatable iron were all elevated initially in patients with IPF compared with control subjects (%MR, p < 0.0001; TBARS, p = 0.0013; desferrioxamine-chelatable iron, p = 0.0029). Furthermore, the serum %MR was higher in a subset of patients with clinically worsening IPF than in those patients with clinically stable disease (p = 0.002). Treatment did not appear to affect the three different serum indicators of free radical activity. Thus, lipid peroxidation appears to be increased in patients with IPF and is associated with an increase in desferrioxamine-chelatable iron levels. Serum % MR levels appeared to correlate with clinical disease activity, and they may have a role in monitoring disease activity. PMID: 8665056, UI: 96279783 ————————————————————————— – —- Respir Med 1998 Jul;92(7):902-7 Idiopathic pulmonary haemosiderosis. Epidemiology, pathogenic aspects and diagnosis. Milman N, Pedersen FM Department of Pulmonary Medicine, Naestved Hospital, Naestved, Denmark. Idiopathic pulmonary haemosiderosis (IPH) is a rare clinical entity characterized by recurrent episodes of diffuse alveolar haemorrhage, often presenting with haemoptysis. Many patients have iron deficiency anaemia due to deposition of haemosiderin iron in the alveoli, and eventually develop moderate pulmonary fibrosis. Typically, intensive search for an aetiology ends up negative. There is no evidence of pulmonary vasculitis or capillaritis. The aetiology is obscure, but may be an immunological or toxic mechanism causing a defect in the basement membrane of the pulmonary capillary. IPH affects both children and adults. During an acute episode, a chest X-ray demonstrates bilateral, alveolar infiltrates. Sputum examination discloses haemosiderin-laden alveolar macrophages. Diagnosis is established by lung biopsy (fiber-optic or thoracoscopic), showing large numbers of haemosiderin-laden macrophages in the alveoli and without evidence of capillaritis or deposition of immunoglobulins. Corticosteroids and/or immunosuppressive drugs may be effective during an acute bleeding episode, and may in some patients improve symptoms and prognosis on the long-term, but the response to treatment displays great interindividual variation. Publication Types: Review Review, tutorial PMID: 10070562, UI: 99169715 Who loves ya. Tom — Jesus Was A Vegetarian! http://jesuswasavegetarian.7h.com Man Is A Herbivore! http://pages.ivillage.com/ironjustice/manisaherbivore

Response:

- Hide quoted text — Show quoted text -Michael Roeper wrote: > Part of my Lupus is a bad case of  Interstitial Lung Disease (ILD). Within a > month of diagnosis of the ILD using high res CT scans, I went from kind of a > bad case to real worse. Ended up in the hospital with Oxygen Saturation > numbers in the mid 60’s (88 or below requires pt to be oxygen dependend). I > don’t believe that ILD is a normal part of most of your Lupus symptoms but > it’s a big part of mine. I haven’t read a lot about it here. > Went on 4 ltrs of oxygen in the hospitral for 4 days which brought the oxy > sat numbers up to 78. That’s why the 60mg Pred (now 40), trying to get the > ILD to reverse itself. The Doc’s had not expected such a huge case of ILD so > fast on someone so young (48). Scared them and me. People die from this, I > guess. > Have had to buy a pulse oximeter machine ($750.) so I can tesst it at home. > Problem is, the ILD symptoms are almost identical to my history of 4 – 5 > major episodes in the past 16 months of of blood clots (DVT’s) and Pulmonary > Embolisms (PE’s). Hard to tell the difference.Anyone else have to mess with > this crap? > I’m real tired.

Hello Michael, I’ve very sorry.  Between the PPH and the ITP, I find it all over-whelming and don’t know how to help. Are you asking because of wanting to know when to go to hospital? Or meds? Or help with being able to sleep? From another newgroup (to someone who has a relative with lung problems): Morphine or lorazepam will help with acute breathlessness. Maybe he could sleep in a recliner chair rather than in bed. Many people with lung disease cannot lie flat. http://www.lungusa.org/diseases/pulmfibrosis.html Bronchoalveolar lavage (BAL) — a test which permits removal and examination of cells from the lower respiratory tract — may be used to diagnose IPF: this test helps a doctor identify inflammation in lung tissue, and also helps exclude infections and malignancies (cancer) as a cause of a patient’s symptoms. The test is done during bronchoscopy, a special examination of the lung. <end> So inflammation is also involved apparently.  A friend once told me that her FIL had this done and for quite some time, his breathing improved.  The intent of the test is diagnostic, but it did provide some symptomatic relief for a while, for him. Did someone here ask about a CPAP or BI-Pap, would that help your breathing and getting more oxygen? Would it be contra-indicated in your situation? (I don’t know the anwers to these questions, but perhaps you could ask?) Here they can be bought through sleep clinics or places that do pulmonary function tests (on prescription).  Humidification (cold or heated) are adjunct devices which may be used also. If I’ve missed your point, then please forgive. Best wishes, J

Response: