Question:

Hey Ruth Glad you are feeling better with out the hormones, just make sure you take the calcium supplements so you do not have bone loss…hormones prevent bone loss but if you can do with out them good for you…all the better I say… I am also glad your hubby is back at work and doing good also…good news is sometimes hard to find lately for some of us… So nice to see a post from you..dont stay away so long next time Janers

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On Thu, 01 Feb 2001 16:57:05 -0800, ruth…@mcn.org (ruth tay)  wrote: >In the meantime no hormones seem to have improved the Lupus.  I looked >in Dr. Wallaces book and he claims that Lupus patients can have a lot >of extra estrogen in their systems.  Did I misread that or ????  Thanks >for reading all of this but I am glad  to read all of your messages and >catch up on how you all are doing.  feels like coming home.  Hugs  Ruth

Hi Ruth!  Goodness, glad you found your hubby. I don’t have my lupus book at hand but I do know that many lupus patients do seem to respond negatively to estrogen.  I’ve not had that experience fortunately (yet?) but my sister certain has (SLE). *********************************** KCat – I am not a medical professional.  The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm   ("`-”-/").___..–”"`-._   (`6_ 6  )   `-.  (     ).`-.__.’`)    (_Y_.)’  ._   )  `._ `. “-..-”   _..`–’_..-_/  /–’_.’ ,’ (()),-”  (()),’    (((.-’

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<< I looked in Dr. Wallaces book and he claims that Lupus patients can have a lot of extra estrogen in their systems.  Did I misread that or ????>> The information to which you’re referring is on page 124 in THE LUPUS BOOK, rev. ed.  It reads: "Estrogens, or female hormones, can promote autoimmunity, and this can indirectly increase inflammation, whereas androgens (male hormones) generally suppress autoimmunity.  Estrogens increase the production of autoantibodies, inhibit natural killer cell function, and induce atrophy of the thymus gland. Further, in SLE, estrogens are metabolized differently.  Due to an abnormality in a chemical pathway (called 16 alpha-hydroxylation), lupus patients have excess levels of alpha-hydroxyestrone and estriol metabolites.  Males with lupus have lower-than-normal levels of testosterone and other androgens." Sandra

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This Link might be useful to you. http://ehpnet1.niehs.nih.gov/docs/1999/suppl-5/681-686ahmed/abstract…. Click on "full article" at the bottom of the page & then enter the username as "auto" and password as "media". I think you will find it interesting reading. Good luck, Dunk

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We were real busy taking my husband to Stanford Medical for cancer treatment and I ran out of premarin and didn’t get around to reordering it.  Haven’t had any for six weeks and I feel a lot better.  Of course I haven’t been able to see my Rheumy or orthopedist or G.P. either for two months either. I still take the plaquenil and the vioxx daily and have been just fine.  The only time I had problems pysically was while waiting outside of the operating room and after 5 hours the hospital couldn’t find him and  I lost it.  My imagination went crazy until they found him [45 minutes]  I think they call it major stress. He is really fine and after all this he is back at work and feeling no ill effects. In the meantime no hormones seem to have improved the Lupus.  I looked in Dr. Wallaces book and he claims that Lupus patients can have a lot of extra estrogen in their systems.  Did I misread that or ????  Thanks for reading all of this but I am glad  to read all of your messages and catch up on how you all are doing.  feels like coming home.  Hugs  Ruth

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> Actually, Thalidomide is again being prescribed in the UK for people > with severe lupus that is affecting the skin

I am aware of this. In severe cases of Lupus. Not people who have just been diagnosed. Thalidomide works because of it’s positive effect on blocking of TNF-Alpha (Tumor Necrose Factor), which is (one of) the cause(s) of the inflammation. DHEA works on the Interleukine 2 and 6. So what do you have to block to get the best result. My approach would be to find what is causing Lupus. I realise that at that moment all we can do is attack the symptoms, because we know too little. Furthermore I believe that Thalididomide was prescribed as a sleeping pill. This will make you happy takin’ it at daytime……not. Sebio Sent via Deja.com http://www.deja.com/ Before you buy.

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In article <8vdimr$5t…@nnrp1.deja.com>, 00n…@my-deja.com wrote >> Actually, Thalidomide is again being prescribed in the UK for people >> with severe lupus that is affecting the skin >I am aware of this. In severe cases of Lupus. Not people who have just >been diagnosed.

[] You’d be surprised how severe some people’s lupus can be before they get a diagnosis! — Andy For Austrian philately <URL: http://www.kitzbuhel.demon.co.uk/austamps/> For Lupus <URL: http://www.kitzbuhel.demon.co.uk/lupus/> For my other interests <URL: http://www.kitzbuhel.demon.co.uk/>

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In article <MkMevIA$VoG6E…@kitzbuhel.demon.co.uk>,   Andy <a…@kitzbuhel.demon.co.uk> wrote: > In article <8vdimr$5t…@nnrp1.deja.com>, 00n…@my-deja.com wrote > >> Actually, Thalidomide is again being prescribed in the UK for people > >> with severe lupus that is affecting the skin > >I am aware of this. In severe cases of Lupus. Not people who have just > >been diagnosed. > You’d be surprised how severe some people’s lupus can be before they get > a diagnosis!

OK, I agree again. The specialist from another hospital adviced her to discontinue the use. The didn’t understand the decision of her doctor. Her LE wasn’t that severe. Sebio Sent via Deja.com http://www.deja.com/ Before you buy.

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In article <8ve33p$ip…@nnrp1.deja.com>, 00n…@my-deja.com wrote – Hide quoted text — Show quoted text ->In article <MkMevIA$VoG6E…@kitzbuhel.demon.co.uk>, >  Andy <a…@kitzbuhel.demon.co.uk> wrote: >> In article <8vdimr$5t…@nnrp1.deja.com>, 00n…@my-deja.com wrote >> >> Actually, Thalidomide is again being prescribed in the UK for >people >> >> with severe lupus that is affecting the skin >> >I am aware of this. In severe cases of Lupus. Not people who have >just >> >been diagnosed. >> You’d be surprised how severe some people’s lupus can be before they >get >> a diagnosis! >OK, I agree again. The specialist from another hospital adviced her to >discontinue the use. The didn’t understand the decision of her doctor. >Her LE wasn’t that severe.

Glad to hear it – long may it remain so. — Andy For Austrian philately <URL: http://www.kitzbuhel.demon.co.uk/austamps/> For Lupus <URL: http://www.kitzbuhel.demon.co.uk/lupus/> For my other interests <URL: http://www.kitzbuhel.demon.co.uk/>

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Let me explain what I’m doing in this newsgroup. My girlfriend has Lupus. As I’m interested in vitamins etc. I’m trying the best I can to find some solution for her. I know there must be something. What I found out in the years that I read about all sorts of diseases, is that the Pharmacologists never seem too find a real answer. They allways find something that you’ll have to take for the rest of your life and they will NEVER advice you to take something that they don’t have patented themselves. How much money did they spent on research of the "new" pill GL701?? (probably around the $500,000,000.-) They will advice you NOT too take the hormone DHEA (because the can’t patent it, so they won’t make enough money). The same happened with melatonin. They warn you not to take it as it is a brain hormone and they don’t know what it will do. Reason why you shouldn’t take it is because the make a pile of money selling addictive sleeping pills. And it’s a shame that a lot of doctors are mislead by the people who are making money over the backs of people who are ill. I know a lot of people will listen to what a doctor has to say. The reason why we’re out here is because we want to know more. We are the pain in the doctors ass. Finding a doctor that listens to you and is willing to help you with vitamins and supplements like DHEA seems to be difficult. My girlfriend was prescribed (after a bad respons to Plaquenil) to take Softenon (Thalidomide, you remember????). When she went to see an other specialist about this, he said that this was for people with severe SLE. She has LE and is in her first year. Stopping with birth control pills and thalidomide helped her get on her feet again. She started in the same period to take a supplement with glucosamine, chondroitine and DHA/ EPA for her shoulder. Within a week her shoulder had less pain. Three weeks later she can use her arm allmost completely. But will a doctor ever advice this….What do you think? Has he ever heard of glucosamine? Sebio Sent via Deja.com http://www.deja.com/ Before you buy.

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In article <8vanjr$rr…@nnrp1.deja.com>, 00n…@my-deja.com wrote [] >My girlfriend was prescribed (after a bad respons to >Plaquenil) to take Softenon (Thalidomide, you remember????). When she >went to see an other specialist about this, he said that this was for >people with severe SLE. She has LE and is in her first year.

Actually, Thalidomide is again being prescribed in the UK for people with severe lupus that is affecting the skin (not confined to Discoid) and is, I hear, proving remarkably successful. They have to, and do, take extreme care that the patient does not become pregnant. I recently had to advise a very worried mother that her 45-year old son was unlikely to suffer from the well-remembered side effect — Andy For Austrian philately <URL: http://www.kitzbuhel.demon.co.uk/austamps/> For Lupus <URL: http://www.kitzbuhel.demon.co.uk/lupus/> For my other interests <URL: http://www.kitzbuhel.demon.co.uk/>

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I am sorry for the post I put up yesterday in this thread.  I’d had a bad morning and the second I hit send, I regretted posting that.  I did apologize in a different post for that, but I really shouldn’t have posted at all in this one. Mel "SCroyle909" <scroyle…@aol.com> wrote in message

news:20001117000348.26500.00000114@ng-fu1.aol.com… – Hide quoted text — Show quoted text -> << I have been taking birth control pills for 4 years and I’ve never had any > problems with them. >> > It’s very common for women with lupus not to tolerate hormones like estrogen or > progesterone.  There are a few though who do okay with it.  You’re simply one > of the few. > Sandra

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Melanie~~~No need to apologize!! We all have that notion, gut instinct, from time to time in our replys.  Yours was honest, and I, for one, appreciate that.  Now, my rheumatologist is stoutly against DHEA, says not enough research has been done on the effects of the drug.  And I have never been able to take the pill~~although I had severe endometriosis, so it really didn’t matter, our daughter was a blessing for us. I now use the Alora 0.05mg Estrogen patch, for 5 years, and have had no difficulty with that, even with the onset of my lupus in ‘98.  KimIn article <8v3r80$pg…@slb7.atl.mindspring.net>,   "Melanie Kopfinger" <kfin…@mindspring.com> wrote: – Hide quoted text — Show quoted text -> I am sorry for the post I put up yesterday in this thread.  I’d had a bad > morning and the second I hit send, I regretted posting that.  I did > apologize in a different post for that, but I really shouldn’t have posted > at all in this one. > Mel > "SCroyle909" <scroyle…@aol.com> wrote in message > news:20001117000348.26500.00000114@ng-fu1.aol.com… > > << I have been taking birth control pills for 4 years and I’ve never had > any > > problems with them. >> > > It’s very common for women with lupus not to tolerate hormones like > estrogen or > > progesterone.  There are a few though who do okay with it.  You’re simply > one > > of the few. > > Sandra

Sent via Deja.com http://www.deja.com/ Before you buy.

Response:

> Testosterone seems to be working (DHEA converts into testosterone).

I’m not sure what you mean by this. Dehydroepiandrosterone (DHEA) is a precursor to both estrogen and testosterone.   My belief is that anytime one changes the the chemical and molecular patterns there is cause for concern.  As for DHEA, I will post it under a different thread, since it has become an option for me. to our health kelly

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<< I have been taking birth control pills for 4 years and I’ve never had any problems with them. >> It’s very common for women with lupus not to tolerate hormones like estrogen or progesterone.  There are a few though who do okay with it.  You’re simply one of the few.   Sandra

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I have not been diagnosed with lupus but I have been diagnosed with osteoarthritis.  But the new rheum I went to a week ago is still following up and watching me because I am anemic.  A lot of my medical problems started with taking monthly depo-provera shots that led to a hysterectomy. I now take Premarin. When I went to the rheum. last week, I was telling him how when I woke up from my hysterectomy, I had severe shoulder pain.  The doctors said it was from my arm being overextended.  After I finished telling him about all my history with my joint pain, he asked me when was my hyst. and did they take my ovaries and what hormones do I take.  I thought this was strange that he was asking this and writing it down. I think I know why he was asking now.  I was watching a local 10pm news the other night and there was a story about a local woman with fibromyalgia. She had had it for over 20 years and my rheum was the one who diagnosed her. My rheum was on the news too.  Well, after she was diagnosed this woman did research and realized that she had felt good during her pregnancies when her hormones were high.  After her hysterectomy she started taking hormones and feeling lots of pain.  She decided to try different hormones to see if it was related.  She decided to try natural hormones rather than the synthetic hormones that she was using and used a pharmacy that had a compounding pharmacist make a natural hormone vaginal cream.  She started using it and has been in remission for 3 months with no pain.  This woman thinks that the synthetic hormones that she was taking caused her pain.  My rheum said on the news that researchers are starting to link hormones with pain.  My husband’s neurologist was also on the news talking about this. He believes hormones play a big part.  The reporter said that another patient with fibromyalgia was successfully treated with estradiol instead of the cream.. I do not have fibromyalgia but when I go back on 12/14 to see this rheum. I am going to ask if I can switch to estradiol from Premarin and see if it helps my joint pain.  I am going to ask if my pain might be related to my hormones.               Lynn J.

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Hi Lynn,  well the hormones ideas have been afloat a long time, and now they are thinking this may surely be true that they cause some thing but what..LOL I use the patch, once a week, had a hyster but they left the ovaries, and still I went through the sweats and all a few yrs after, they say your ovaries after a hyster shrink and produce less, so that must be what happened to me… I also was told by rheumy 2 of them, that the use of hormones is beneficial to people with bone loss and it helps with loss, well to prevent it I believe…then on the other side of the coin is the use of hormones may indeed cause some people to have flares..and have what they call anticardiolipins in the blood, which is the cause of clots in the blood, but I was put on baby aspirin 2 a day to counteract this…and it did work for me…I had moderate amts of the anticardiolipiins in my blood and after 6 months controlled…and the bone loss, well I take the patch, well use it and also take calcium with D 1200mg to prevent bone loss.  My bone density is really good, that on a young woman   I am young 55 haha.  Seriuously it is a pro and con issue about hormones, and only you and your doc can decide which is best for you to do..so go and do like you said ask him…. Good luck and keep us posted Janers

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Hi Lynn, We seem to have similar problems. I have been told by one doctor that I have Lupus another that it’s "just connective tissue disease". I’ve had Lupus symptoms on and off for the past twenty years. I had a total hyster at age 38 due to early menopause. Ovaries shut down – no explanations given. I started taking premarin and estratab and I was doing fine for about 8 years. I moved and my new gyn suggested I go on the Vivelle patch because it was more convenient and I was also getting migraines that he felt were due to the premarin. After 1 week on the patch my joints started hurting. I could hardly walk. I couldn’t sleep at night. My hair started falling out. The gyn sent me back to my primary care doctor. My primary care doctor sent me to a rheumy. Then I tested positive for Lupus. I tried to convince my GP, gyn and rheumy that this was all connected to the switch in my  hormones. Not one of them would even consider it. One night I was in so much pain I ripped the patch off and took my oral dose of estrogen. By the next morning most of my joint pain was gone. Now 6 months later I have very little joint pain and no more hair loss. I’m losing faith in doctors. I know my own body. All of this is very discouraging. Connie

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- Hide quoted text — Show quoted text -cgl…@home.com wrote: > Hi Lynn, > We seem to have similar problems. I have been told by one doctor that > I have Lupus another that it’s "just connective tissue disease". I’ve > had Lupus symptoms on and off for the past twenty years. I had a total > hyster at age 38 due to early menopause. Ovaries shut down – no > explanations given. I started taking premarin and estratab and I was > doing fine for about 8 years. I moved and my new gyn suggested I go on > the Vivelle patch because it was more convenient and I was also > getting migraines that he felt were due to the premarin. After 1 week > on the patch my joints started hurting. I could hardly walk. I > couldn’t sleep at night. My hair started falling out. The gyn sent me > back to my primary care doctor. My primary care doctor sent me to a > rheumy. Then I tested positive for Lupus. I tried to convince my GP, > gyn and rheumy that this was all connected to the switch in my > hormones. Not one of them would even consider it. One night I was in > so much pain I ripped the patch off and took my oral dose of estrogen. > By the next morning most of my joint pain was gone. Now 6 months later > I have very little joint pain and no more hair loss. I’m losing faith > in doctors. I know my own body. All of this is very discouraging. > Connie

Hi Connie, Why is this discouraging?  You sound like you are doing fine!  Some doctors don’t understand that what works for one, doesn’t for another (especially with women and hormones). The next concern would be vascular/heart problems risk if no estrogen replacement.  There’s a new estrogen replacement that is different from the patch/pill..doesn’t get absorbed through the liver.. Estrogel..gel on the arms or legs once a day.  Or perhaps, like me, you are unable to tolerate any estrogen replacements and we’ll just have to take our chances, if we feel better without it? http://www.docguide.com/dg.nsf/PrintPrint/F781AE756674B11D8525671B004… Don’t know if it’s available where you are or not.. Best J

Response:

On Sat, 11 Nov 2000 23:44:20 GMT, you wrote: >I do not have fibromyalgia but when I go back on 12/14 to see this rheum. I >am going to ask if I can switch to estradiol from Premarin and see if it >helps my joint pain.  I am going to ask if my pain might be related to my >hormones. >              Lynn J.

My sister (who had an SLE dx, long before hormone attempts and hysterectomy) also had much worse flares whenever they tried to put her on any form of b.c. pill or other hormones. Depo Provera almost killed her (but that is something unique to her, not necessarily a result of the lupus but a result of chemical allergies her immune system has ramped up on).  Yet I do fine on bc. pills.  In fact, I do better *on* them than off.  It’s important IMO to do trial and error and to keep records of symptoms when starting any new med so that with your doctors you can figure out what the heck is going on. (assuming they want to make that effort).  Good luck to both of you! Take care *********************************** KCat – I am not a medical professional.  The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm   ("`-”-/").___..–”"`-._   (`6_ 6  )   `-.  (     ).`-.__.’`)    (_Y_.)’  ._   )  `._ `. “-..-”   _..`–’_..-_/  /–’_.’ ,’ (()),-”  (()),’    (((.-’

Response:

Connie, I really do think that the depo-provera shots that I took for endometrial hyperplasia started my problems but I didn’t have the extreme joint pain until May of this year.  I am just trying to find something to relieve the joint pain besides taking pain pills.  This new rheum.  took me off of all arthritis medicine until they figure out why I’m anemic.                    Good luck, Lynn J. – Hide quoted text — Show quoted text -<cgl…@home.com> wrote in message news:3A0ECDE2.F5E11F7F@home.com… > Hi Lynn, > We seem to have similar problems. I have been told by one doctor that I > have Lupus another that it’s "just connective tissue disease". I’ve had > Lupus symptoms on and off for the past twenty years. I had a total > hyster at age 38 due to early menopause. Ovaries shut down – no > explanations given. I started taking premarin and estratab and I was > doing fine for about 8 years. I moved and my new gyn suggested I go on > the Vivelle patch because it was more convenient and I was also getting > migraines that he felt were due to the premarin. After 1 week on the > patch my joints started hurting. I could hardly walk. I couldn’t sleep > at night. My hair started falling out. The gyn sent me back to my > primary care doctor. My primary care doctor sent me to a rheumy. Then I > tested positive for Lupus. I tried to convince my GP, gyn and rheumy > that this was all connected to the switch in my  hormones. Not one of > them would even consider it. One night I was in so much pain I ripped > the patch off and took my oral dose of estrogen. By the next morning > most of my joint pain was gone. Now 6 months later I have very little > joint pain and no more hair loss. I’m losing faith in doctors. I know my > own body. All of this is very discouraging. > Connie

Response:

KCat, What reaction did your sister have to depo-provera?  When I took the shots every month for 6 months, I started bleeding every day and never stopped for 9 months.  The gyn tried everything to get it to stop and couldn’t.  After they did a biopsy of my uterus after the hyst., they still didn’t know why I reacted like that.  I think those shots really messed me up.                    Lynn J. "KCat" <kcdoc…@ghg.net> wrote in message

news:ri7u0t4884ec76cfao6bnpsvs5kq7gpnbf@4ax.com… – Hide quoted text — Show quoted text -> On Sat, 11 Nov 2000 23:44:20 GMT, you wrote: > >I do not have fibromyalgia but when I go back on 12/14 to see this rheum. I > >am going to ask if I can switch to estradiol from Premarin and see if it > >helps my joint pain.  I am going to ask if my pain might be related to my > >hormones. > >              Lynn J. > My sister (who had an SLE dx, long before hormone attempts and > hysterectomy) also had much worse flares whenever they tried to put > her on any form of b.c. pill or other hormones. Depo Provera almost > killed her (but that is something unique to her, not necessarily a > result of the lupus but a result of chemical allergies her immune > system has ramped up on).  Yet I do fine on bc. pills.  In fact, I do > better *on* them than off.  It’s important IMO to do trial and error > and to keep records of symptoms when starting any new med so that with > your doctors you can figure out what the heck is going on. (assuming > they want to make that effort).  Good luck to both of you! > Take care > *********************************** > KCat – I am not a medical professional.  The contents of this post are

based soley on my experiences and opinions – Hide quoted text — Show quoted text -> http://www.ghg.net/schwerpt/mypage.htm > http://www.ghg.net/schwerpt/aslfaq20.htm >   ("`-”-/").___..–”"`-._ >   (`6_ 6  )   `-.  (     ).`-.__.’`) >    (_Y_.)’  ._   )  `._ `. “-..-” >   _..`–’_..-_/  /–’_.’ ,’ > (()),-”  (()),’    (((.-’

Response:

On Mon, 13 Nov 2000 04:11:28 GMT, you wrote: >KCat, >What reaction did your sister have to depo-provera?  

It was sneaky.  It appeared first as severe depression then ramped up to life-threatening asthma attacks.  By the end of the first dose (3 months?) she was feeling better, assumed it was "just allergies" and situational depression and went in for another shot.  Then an emergency trip to the hospital for yet another asthma attack.  As time went on she began to get hives, severe IBS and a few other of her old lupus symptoms back (joint pain, migraines, etc.)  AFter the 3rd dose they finally snapped but by then she was in a bad flare and suicidal. Her asthma and depression faded the further she got from the shots. She had had problems with other hormones (synthetic and "natural") before and they kind of thought of the Depo as a last hope to control her PMS, pain, etc.  It wasn’t until 3 years later they discovered she had severe endometriosus and adenomatosus. >9 months.  The gyn tried everything to get it to stop and couldn’t.  After >they did a biopsy of my uterus after the hyst., they still didn’t know why I >reacted like that.  I think those shots really messed me up.

Like so many meds (okay, all) we all react differently and the end result for her was hysterectomy as well.  I don’t know what if anything they are doing about the risk of osteoporosis and other such problems from no hormones.  I have talked to folks (lupies included) that did just fine on Depo and swear by it – likewise I do great on "the pill".  I’m sorry you had to go through that though and I would think that anything that takes effect for 3 months at a time probably has a slightly higher risk of causing more acute reactions like that. seems like a lot of hormone to hit the body with at once. Take care. *********************************** KCat – I am not a medical professional.  The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm   ("`-”-/").___..–”"`-._   (`6_ 6  )   `-.  (     ).`-.__.’`)    (_Y_.)’  ._   )  `._ `. “-..-”   _..`–’_..-_/  /–’_.’ ,’ (()),-”  (()),’    (((.-’

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<<I really do think that the depo-provera shots that I took for endometrial hyperplasia started my problems>> My daughter was unable to tolerate even the tiniest dose of hormones (estrogen or progesterone).  This is not uncommon with lupus.  A rheumatologist at NIH told me that most of his lupus patients don’t tolerate hormones, while most of his RA patients don’t seem to have problems with them. Sandra

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Hello, I’m new to this newsgroup. I read several articles about hormones and Lupus. In my point of view, Lupus and hormones are related. The problem is female hormones. People taking DHEA (or GL701) seem to be doing better. People taking birth control pills seem to be doing worse. So avoid birth control pills (definitely if your a man). Testosterone seems to be working (DHEA converts into testosterone). Furthermore I heard a problem with painful joints. My girlfriend (who has Lupus) started taking Natural Pain Relief (http://www.lef.org/prod_desc/index.html). This worked excellent. The pain and inflammation in her shoulder felt much better. She doesn’t take DHEA yet, but I hope the doctor will aprove a test with this. In Holland they seem to be pretty conservative, which annoys me. Hope to be of help.. Sebastiaan Sent via Deja.com http://www.deja.com/ Before you buy.

Response:

Hi, I just felt I had to butt in for a sec.  I have been taking birth control pills for 4 years and I’ve never had any problems with them.  I may be taking your general statements a little harshly, but I think that you should ask the people who are on them before you go jumping to conclusions. Mel – Hide quoted text — Show quoted text -<00n…@my-deja.com> wrote in message news:8v0mhc$7sp$1@nnrp1.deja.com… > Hello, > I’m new to this newsgroup. I read several articles about hormones and > Lupus. In my point of view, Lupus and hormones are related. The problem > is female hormones. People taking DHEA (or GL701) seem to be doing > better. People taking birth control pills seem to be doing worse. So > avoid birth control pills (definitely if your a man). Testosterone > seems to be working (DHEA converts into testosterone). Furthermore I > heard a problem with painful joints. My girlfriend (who has Lupus) > started taking Natural Pain Relief > (http://www.lef.org/prod_desc/index.html). This worked excellent. The > pain and inflammation in her shoulder felt much better. She doesn’t > take DHEA yet, but I hope the doctor will aprove a test with this. In > Holland they seem to be pretty conservative, which annoys me. > Hope to be of help.. > Sebastiaan > Sent via Deja.com http://www.deja.com/ > Before you buy.

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Question:

Then there is the ultimate, first of the day, fill up a half-cleaned mug with what is left in the Mr. Coffee, break up some pre-moistened sugar and a lump of no longer homogenized milk, nuked for 2 minutes in the microwave, spoon off the white floaters ; give it a quick sniff just to be sure and VOILA, bachelor coffee. Drink in Peace, Richard Of course there is always the tall, clear coffee cup filled with sweetened black coffee and a half-inch of sweetened heavy cream floating on the top! Sue

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Ah, but there’s nothing like ice-cold water in the teakettle, a scoop (or two, if a friend is by) of Irish Breakfast (or other black) tea, boil ’til roiling, then steep ’til just right . . . mmmmm mmmmmm even tea bags (horrors!) are acceptable if the water is cold and comes to a full rolling boil. That’s the Irish half of me, the part with the temper, speaking up . . . mary

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I like my coffee the way I like my women…strong, black and bitter!  My Japanese wife says that two out of three ain’t bad! — Bill Work

– Hide quoted text — Show quoted text – Then there is the ultimate, first of the day, fill up a half-cleaned mug with what is left in the Mr. Coffee, break up some pre-moistened sugar and a lump of no longer homogenized milk, nuked for 2 minutes in the microwave, spoon off the white floaters ; give it a quick sniff just to be sure and VOILA, bachelor coffee. Drink in Peace, Richard Of course there is always the tall, clear coffee cup filled with sweetened black coffee and a half-inch of sweetened heavy cream floating on the top! Sue

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ROFLOL! Now that brings back memories.  When I lived in Pa my dad would come to visit me, often arriving late in the afternoon.  Now in my house there was usually a pot of coffee on until about 2 pm or so.  He would show up at 6:00 pm and ask for a cup of coffee.  I would promptly go to throw out the dehydrated burnt coffee in the bottom of the caraf in order to make a new pot and he would loudly protest that I just toss this mud in a cup and pop it in the microwave for a few. Must be a "man" thing,  LOL! Sue

– Hide quoted text — Show quoted text – Then there is the ultimate, first of the day, fill up a half-cleaned mug with what is left in the Mr. Coffee, break up some pre-moistened sugar and a lump of no longer homogenized milk, nuked for 2 minutes in the microwave, spoon off the white floaters ; give it a quick sniff just to be sure and VOILA, bachelor coffee. Drink in Peace, Richard Of course there is always the tall, clear coffee cup filled with sweetened black coffee and a half-inch of sweetened heavy cream floating on the top! Sue

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This thread is hilarious!!! But i have nuttin to add. I gotta have mine fresh, a touch of vitamin D milk and two packets equal.. no fun am I.. LOL Before you buy.

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Then there is the ultimate, first of the day, fill up a half-cleaned mug with what is left in the Mr. Coffee, break up some pre-moistened sugar and a lump of no longer homogenized milk, nuked for 2 minutes in the microwave, spoon off the white floaters ; give it a quick sniff just to be sure and VOILA, bachelor coffee. Drink in Peace, Richard

IMPOSSIBLE!!! The optimum cup of coffee is made as follows: 1. Slow roast a handful of flash-frozen Jamaican Blue Mountain coffee beans on a tray, turning sow as to keep the roasting even. 2. Heat filtered cold spring water to a rolling boil and let it cool to a temperature of 80 degrees celsius. 3. Grind – do not chop – the still-warm beans using an extra-fine grinder that is absolutely clean. 3a. Pause for a moment to savour the aroma of the finest coffee in the world. 4. Scoop 2 measures of of the ground coffee into a cone filter. Place on top of a 12-oz mug. 5. Pour some of the hot water thru a seive into the sink to warm it up. 6. Immediately pour the hot water thru the seive onth the ground coffe in the filter so as to moisten the coffee evenly. Pour in small amounts at a time so as not to overfill the cone and dilute the flavour. 7. Sweeten with honey or dark brown sugar – processed white sugar is verboten. 8. Slowly pour in Devon Cream. Stirring as you pour. 9. Slowly bring to your lips, allowing the aroma to fill your nostrils and Wake up, realise that anybody that can afford this coffee would have the butler make it, mix up the bachelor coffee, force it down and go to work in a foul temper! Of course there is always the tall, clear coffee cup filled with sweetened black coffee and a half-inch of sweetened heavy cream floating on the top! Sue

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   Ahhh … Richard’s coffee recipe kinda reminds me of life before I was married.    Y’know ~ ya gotta wash your own dishes, make your own bed … .. then a month later, ya gotta do it all over again! It *seemed* to be the good life back then.    I have to admit, pain and all, life’s better now.  My only real sense of loss is when I think of how the Gubmint ‘regulated’ me out of my career as a tractor-trailer driver, which I did from 15 years old (1975) to 36 (1996) years old.  How I loved to drive the really big ones — a 52′ trailer pulled by a 26′ conventional Pete ~ 550 Kittypillar, that grossed out at 104,800 pounds!! Big Bro said a CDL diver can’t take narcotics and run a truck grossing over 26,000 pounds.  "Ask not what your country can do for you …"  No shit !!    Talk about depression — I lost my sense of ‘what’ I was, ’cause I defined myself by how I earned my living.    I recently bought an Art Gallery and Custom Picture Framing business. Does that make me an Art Gallerier … a Framerer … what????  *I* know . ~ I’m a bidnessman !

Question:

…People choose disease because their situations are …intolerable at the emotional level.

God, this sort of sentiment really makes me puke.  A lovely "blame the victim" statement.   — David Wright :: wright at ibnets.com :: Not a Spokesman for Anyone      These are my opinions only, but they’re almost always correct.              The Millennium actually begins on January 1, 2001                 So Get Ready for a Second Round of Parties

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…Two, people get tired of living the way we live and …they find ways to "bug out," or blow their brains out. …The people who treasure and cherish life take care of themselves. …The people who squander their lives, squander themselves also.

Treasuring life does not preclude cancer or brain tumors or…… Suicide versus getting a "disease" are very distinct entities. " …Yet, each soul has its own competence and will. …People choose disease because their situations are …intolerable at the emotional level.

I think of hypochrondriacs but again I don’t think people can "will" themselves of getting cancer. Why only choosing disease at the emotional level- why not at the subconscious level?? frank Before you buy.

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Actually, Carolyn Myss has written some very interesting books about the connection between our spirit and dis-ease.  She says something like, "psychology is biology" which means our thoughts, whether realized consciously or not, our perceptions, create not only the world around us but also affect our physical functioning in that world.  "Your body believes every word you say." Psychoneuroimmunology is the "scientific" look into this mind/body connection and one of the more fascinating discoveries I read is that things like asthma and arthritis are both psychosomatic conditions.  Now this doesn’t mean anyone sets out to deliberately become ill, nor that what they experiences isn’t painful or can’t be life-threatening, but it does mean that there is much more to the way our bodies react to our reactions than previously supposed. Those who refuse to take responsibility for their lives may find a way to exist seemingly comfortably from all outward appearances, yet come down with a dis-ease like cancer.  Why?  Because subconsciously, their fears literally "eat away" at them.  A heart attack can be seen as a literal experience using this school of thought.  And if you take it a step further and are open enough to try to incorporate a higher (spiritual) purpose to our lives, then there is also the possibility that some people are simply using the experience of a fatal disease to come to terms with something far greater.   It’s a big, still very mysterious field but one which I have always found utterly fascinating. PJ. Astrology & New Age Garnered Images Astrology [ Where beauty moves and wit delights and signs of kindness bind me, there, oh there, wher’ere I go, I leave my heart behind me. (Thomas Ford, 1607) [

  …Two, people get tired of living the way we live and   …they find ways to "bug out," or blow their brains out.   …The people who treasure and cherish life take care of themselves.   …The people who squander their lives, squander themselves also.   Treasuring life does not preclude cancer or brain tumors or……   Suicide versus getting a "disease" are very distinct entities.   "   …Yet, each soul has its own competence and will.   …People choose disease because their situations are   …intolerable at the emotional level.   I think of hypochrondriacs but again I don’t think people can "will"   themselves of getting cancer. Why only choosing disease at the   emotional level- why not at the subconscious level??   frank   Before you buy.

Response:

…Nobody gets out of here alive, anyway, one

Yes, but I want to get out in peace and serenity, not writhing in pain or  assisted by artificial means like colostomy bag, dialysis machine, donnated organs…Arthritis, Dementia, Parkinson … I want none of them …Two, people get tired of living the way we live and …they find ways to "bug out," or blow their brains out.

Bug out in this life does not mean a final solution. Try to make the best out of it. In this domain I find that Buddhism is hard to beat. We DON’T HAVE TO BE SICK (see the thread Success Story elsewhere in this NG). …Patching people up at great cost makes no cosmic sense.

Agree 100%. But what if we can patch ourselves at little or no cost? The importance here is to heed the warning buzz of our body and try to solve the problem before it becomes serious. Diseases never come suddenly without warnings: recurent headache, pain, rash, faint, persistent cough… Before you buy.

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– Hide quoted text — Show quoted text – This is a multi-part message in MIME format. Content-Type: text/plain;    charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable Don’t worry, Dr. Frank, you phrase your points nicely and I know you = don’t intentionally try to pick fights just for the sake of fighting. However, I did read about researchers teaching an adult woman with no = history of allergies to manifest an asthmatic reaction every time she = put her lips to a drinking straw.  The image stuck with me, and my guess = is that some individuals do have an asthma attack in reaction to = (whatever…fill in the blank here) but then for probably very subtle = (subconscious) reasons, such as their parents’ panic, the words that = "asthma is forever," perhaps even a need for attention, they learn to = have that same asthmatic reaction all the time. And if you are willing to admit that stress can cause susceptability to = dis-eases such as URIs, then doesn’t it make sense that same stress over = a much longer period could also weaken other bodily functions to the = point of something like cancer being able to manifest? (I’m not trying = to be argumentative, just "thinking out loud.") I know many of these ideas sound extremely "new age" in the worst sense = of the words, but just because science cannot yet quantify and label it = is no reason to not keep an open mind.  (My opinion, of course.)  So = much of what we take for granted in allopathic medicine today was = considered voodoo in earlier times.  Actually, not even all that much = earlier.  100 years or so isn’t that far back. If something like learning to accept the consequences of one’s choices = then induces a "mere" placebo healing effect from dis-ease, isn’t that = really much better for everyone in the long run? =20 In light of all this, may I (very politely) ask how you explain = spontaneous remission?  (Feel free to discuss this with me via email if = your flame-proof jammies are at the cleaners.) PJ. Hi-

A couple of points. Regarding the asthmatic reaction I wonder if this was a true asthmatic attack vs hyperventilation  or something mimicking an attack. Sometimes the symptoms may appear to be similar but the actual diagnosis’s are different. I just don’t think one can catch leukemia by being stressed out or by poor health . My little nephew had leukemia – he was very healthy both mentally and physically prior. What worries me is people thinking that all of the diseases/illnesses are caused by their emotional /spiritual  well being. I view spontaneous remission the same as an acute disease process onset with an idiopathic etiology (unknown cause). Sometimes the disease just goes into remission as suddenly as it came on. Good thoughts BTW.  Smile. frank Before you buy.

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Don’t worry, Dr. Frank, you phrase your points nicely and I know you don’t intentionally try to pick fights just for the sake of fighting. However, I did read about researchers teaching an adult woman with no history of allergies to manifest an asthmatic reaction every time she put her lips to a drinking straw.  The image stuck with me, and my guess is that some individuals do have an asthma attack in reaction to (whatever…fill in the blank here) but then for probably very subtle (subconscious) reasons, such as their parents’ panic, the words that "asthma is forever," perhaps even a need for attention, they learn to have that same asthmatic reaction all the time. And if you are willing to admit that stress can cause susceptability to dis-eases such as URIs, then doesn’t it make sense that same stress over a much longer period could also weaken other bodily functions to the point of something like cancer being able to manifest? (I’m not trying to be argumentative, just "thinking out loud.") I know many of these ideas sound extremely "new age" in the worst sense of the words, but just because science cannot yet quantify and label it is no reason to not keep an open mind.  (My opinion, of course.)  So much of what we take for granted in allopathic medicine today was considered voodoo in earlier times.  Actually, not even all that much earlier.  100 years or so isn’t that far back. If something like learning to accept the consequences of one’s choices then induces a "mere" placebo healing effect from dis-ease, isn’t that really much better for everyone in the long run?   In light of all this, may I (very politely) ask how you explain spontaneous remission?  (Feel free to discuss this with me via email if your flame-proof jammies are at the cleaners.) PJ. Astrology & New Age Garnered Images Astrology [ Where beauty moves and wit delights and signs of kindness bind me, there, oh there, wher’ere I go, I leave my heart behind me. (Thomas Ford, 1607) [

  This is a multi-part message in MIME format.     Content-Type: text/plain;   charset="iso-8859-1"   Content-Transfer-Encoding: quoted-printable     Actually, Carolyn Myss has written some very interesting books about   the =   connection between our spirit and dis-ease.  She says something like,   =   "psychology is biology" which means our thoughts, whether realized =   consciously or not, our perceptions, create not only the world around   us =   but also affect our physical functioning in that world.  "Your body =   believes every word you say."     Psychoneuroimmunology is the "scientific" look into this mind/body =   connection and one of the more fascinating discoveries I read is that   =   things like asthma and arthritis are both psychosomatic conditions.   Now =   this doesn’t mean anyone sets out to deliberately become ill, nor   that =   what they experiences isn’t painful or can’t be life-threatening, but   it =   does mean that there is much more to the way our bodies react to our   =   reactions than previously supposed.     Those who refuse to take responsibility for their lives may find a   way =   to exist seemingly comfortably from all outward appearances, yet come   =   down with a dis-ease like cancer.  Why?  Because subconsciously,   their =   fears literally "eat away" at them.  A heart attack can be seen as a   =   literal experience using this school of thought.  And if you take it   a =   step further and are open enough to try to incorporate a higher =   (spiritual) purpose to our lives, then there is also the possibility   =   that some people are simply using the experience of a fatal disease   to =   come to terms with something far greater. =20      PJ.     Look, I accept the notion that stress and well being has a lot to do   with how we deal with illness and even susceptibility to certain   infections (viral-upper respiratory infection). But I refuse to believe   that  asthma or arthritis are psychosomatic conditions (tell that to   the poor kid with JRA) or that "our body believes everything we say".   One "doesn’t come down with cancer" because of refusal to take   responsibility.   Don’t worry, no flaming here and I’m not discounting what you believe.   But the notion of getting sick because one "deserves it" and that   cancer is the result of subconscious fears is too "new age" for my   tastes. Let’s forget about solid science.   frank   Before you buy.

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– Hide quoted text — Show quoted text – This is a multi-part message in MIME format. Content-Type: text/plain;    charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable Actually, Carolyn Myss has written some very interesting books about the = connection between our spirit and dis-ease.  She says something like, = "psychology is biology" which means our thoughts, whether realized = consciously or not, our perceptions, create not only the world around us = but also affect our physical functioning in that world.  "Your body = believes every word you say." Psychoneuroimmunology is the "scientific" look into this mind/body = connection and one of the more fascinating discoveries I read is that = things like asthma and arthritis are both psychosomatic conditions. Now = this doesn’t mean anyone sets out to deliberately become ill, nor that = what they experiences isn’t painful or can’t be life-threatening, but it = does mean that there is much more to the way our bodies react to our = reactions than previously supposed. Those who refuse to take responsibility for their lives may find a way = to exist seemingly comfortably from all outward appearances, yet come = down with a dis-ease like cancer.  Why?  Because subconsciously, their = fears literally "eat away" at them.  A heart attack can be seen as a = literal experience using this school of thought.  And if you take it a = step further and are open enough to try to incorporate a higher = (spiritual) purpose to our lives, then there is also the possibility = that some people are simply using the experience of a fatal disease to = come to terms with something far greater. =20  PJ.

Look, I accept the notion that stress and well being has a lot to do with how we deal with illness and even susceptibility to certain infections (viral-upper respiratory infection). But I refuse to believe that  asthma or arthritis are psychosomatic conditions (tell that to the poor kid with JRA) or that "our body believes everything we say". One "doesn’t come down with cancer" because of refusal to take responsibility. Don’t worry, no flaming here and I’m not discounting what you believe. But the notion of getting sick because one "deserves it" and that cancer is the result of subconscious fears is too "new age" for my tastes. Let’s forget about solid science. frank Before you buy.

Response:

…Nobody gets out of here alive, anyway, one …Two, people get tired of living the way we live and …they find ways to "bug out," or blow their brains out. …Patching people up at great cost makes no cosmic sense. …The people who treasure and cherish life take care of themselves. …The people who squander their lives, squander themselves also. …When "healing" becomes a business, then it losts touch …with these realities, and it seeks only to make money …like other businesses. …At that point, medicine becomes "invested" in seeing to it …that people get labelled as "sick," or "crazy" or "needing help." …Yet, each soul has its own competence and will. …People choose disease because their situations are …intolerable at the emotional level. …Happy people thrive–sometimes on the backs of …unhappy and powerless people. …Health is a whole spectrum of choices around breathing, …sleep, eating, drinking and sexual relations. Although …health is a matter of direct choice, most of the time, …the children subject to neglectful parents and people who …experience accidents also get to experience …"emergency medicine" as their experience. …"Emergency medicine" has its OWN karma. …So let’s not get confused and believe that "being good" and …being "healthy" are the same thing, or that …"being good" and longevity are the same thing. …Sometimes the people who outlive everybody else are …the ones who detest what is going on in front of their eyes …and who realize, God is also playing in this arena. compania

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Question:

Hi Starwind, The cost for my first time was $415.00.  Now I pay $160.00 per visit and that is every 4 to 6 months depending on how I am doing.  (This includes the office visit and a spirogram). I do know I would be in a world of hurt if I didn’t have insurance and I certainly hope you will be able to get something worked out! Good luck, Patrice – Hide quoted text — Show quoted text – A question for the group…. How much does a typical first time visit to a pulmonologist/other asthma specialist cost? It looks like I may have no choice but to go to one, as my asthma is doing strange things [er, like PFs dropping into the 40-50% range and then *staying* there and not reversing very well at all... and yet I am not having an 'active' fullblown asthma attack... something they have not done in all the time that I have been monitoring my PFs]… I am back on a pred taper [well, a revised pred taper... went on a 60-60-60-40-40-40-20-20-20mg deltasone taper and was doing reasonably better (PFs occasionally getting above 80%, but really still living in the 60-80% range) until the second day of 20mg/d, when they dropped again... Yesterday  I actually blew a 375 in the MDs office (which is about 60% for me), the lowest I ever did there, and earlier in the day my PFs hit 250 (er, 310 = 50%)...  So we changed the pred taper to start on that day [day 3 of 20 which was the last day from the first taper] with 40mg/d, which I am to do for five days, followed by five days at 20…    We have also dropped my Pulmicort to 1200 mcg/d because my MD is very concerned about the dose being so high AND being above the recommended maximum dose [which is 1600 mcg/d]. Along with all this at the beginning of the first pred taper I had some meds changed:  continue on what I was already on [Pulmicort 2000 mcg/d, Intal MDI 2 puffs 4x/d] and add Serevent MDI 2 puffs 2x/d, and change antihistamine from Zyrtec [which was working very poorly] to Trinalin {which is azatadine AND pseudoephedrine) 120 mg 2x/d. So, current meds: Pulmicort Turbuhaler – 1200 mcg/d [that is 6 puffs/d] Servent MDI –              2 puffs, 2 times a day Intal MDI –                   2 puffs, 4 times a day Trinalin –                      1 tablet twice a day Deltasone –                 40 mg/d for 5 days [this being                                   day 2], then 20mg/d for 5 days. My MD is concerned and uncomfortable. I am concerned and uncomfortable.  My MD wants to be able ‘to sleep at night’ wrt the meds we prescribe me. To add to this — for the last almost week and a half I have felt on and off like I was coming down with a cold.  you know, your ears start to hurt, or your throat gets soe, or your nose gets that funny sorish I am about to get a cold feeling.  The symptoms might last for 24 hours or so, but not really get worse in that time… then the next morning I woud wake up and they woudl be gone… though the asthma would still be messed up.  the cold never materialized.  BTW — the asthma ‘flare’ or whatever the heck you want to call it began a day or so before the first ‘cold’ symptoms… with a gradual decline in PFs and n=increased SOB doing normal things, like walking from place to place. Now, after telling him about how I was feeling, one of my friends has said that some kind of viral thing like this is going around — people will feel like they are coming down with a cold then it seems to clear up and they go thrugh this cycle for a few weeks, never becoming outright obviously "sick".  Whether this is true or not, and if so what exactly it might be, I have no clue…  Anyone know if there is something like that going around?? today both of my ears hurt, my nose is stuffy, my head hurts, my chest has been hurting for the last couple hours, and my peak flows are doing their charming best to aggravate me.  I get SOB walking down the hall to another part of this building.  Going outside results in noticeable SOB and even a little bit of wheezing [something I normally only very rarely do!] and a measurable drop in PF by the time I walk across the street. I cant say if my ‘allergies’ [hay fever, eczema and such] are ‘bad’ right now, because the Trinalin is working nicely…  though I fell asleep without taking it last night and this morning woke up very congested, so perhaps it is working.  I really don’t want to stop taking it to see if the other allergy symptoms come back or not…  So that indicator is kind of not there due to the change in meds. Allergens here lately have been "high" for weeds and molds, low-high for grasses and pollens, depending on the day. Maybe I have a virus or critter of some kind… maybe it is allergies… maybe both…  don;t know, and can’t tell since I don’t seem to stay "sick" outside of the asthma itself for long enough to tell… Anyhow, I am babbling… I feel miserable.  And am actually… well, scared maybe isn’t the right word… but concerned… i a way very different than even when having a severe attack [the meds usually work at least then and I can feel that I getting better ].  But I am not used to this kind of creeping not getting well/getting worse. I have had asthma since I was 14; now, over a dozen years later, it is doing things it never used to do.  Since November of 1998 I have been on prednisone more times [and for longer in total # of days] than in my entirre LIFE prior to that — including 20 days out of the month of Nov 1998, and 25 days straight in May 1999, plus numerous shorter bursts in between.  I got a Kenalog shot for the first time in August 1998, and then one again in the early winter of 99. Since May 1999 I have had a couple of short [couple day] non-taper bursts, until now. I guess, looking back, I had worse problems when I first developed asthma — actually NEEDING a Ventolin neb Tx every 4 hours or so… But at least then I had active attacks…  hm… don;t know how to describe it….  But different from now… very different. Now it is this creeping problem…  VERY low default peak flows that just sit there and don’t reverse well…  My personal best PF is 620. My ‘normal’ when I am doing really well is around 580-600; we’ll say 580 for argument’s sake.  if I am doing above 550 I am pleased Dropping into the 400’s means meds need changing, and usually occurs when I am having more active problems — I will get SOB easier, have active attacks, have other allergy symptoms, come down with a URI, etc etc…  PFs into the 300’s for me just don’t happen unless I am having an actual attack… or at least have not happened that I have measured since 1990 when I first began monitoring my PFs [as part of a drug study].  Going BELOW 300 also has not happened unless I have been in a fullblown attack — and when it did I was in *severe* distress. But now I have had a PF at 250 and not felt like I was in an active attack… well, ok, I could only speak in short phrases/partial sentences at the time…  but… oh, how to describe it… it was DIFFERENT… And my PFs were 375 in the MDs office [I had been hoping that maybe my PF meter was messed up... evidently it is not ( ], but again though I was mildly SOB and couldn’t walk across the street without becoming much more SOB and having the equivalent of what for me is a ‘mild attack’…  well, it was still very different… not what I am used to… argh… i guess i am just needing to vent and ramble here… I would love comments/insight/questions etc from all of you [except for the Buteyko people and those wishing to sell me the latest and greatest wonder cure, please!! ]. And back to the original question/reason for this post… If this taper does’t work, my MD *IS* sending me to a specialist <that sleeping at night thing … and I agree with that… BUT, I have ZERO insurance… Meds are already $450 a month, which is a not-insignificant expense [heck, it is more than car payment + car insurance combined!!]. So I am wondering how much I might expect to have to pay out of pocket to see the specialist [including labwork that might be done, I guess, too]…. And will US doctors let you pay over time or do you have to pay up front??? Thanks for any replies! SW.

Response:

I think the nose filters out most of the nasal steroid spray; after all nature intended the nose to filter out dust particles,

*nods* My nose is usually too stuffy to breathe through it… I couldn’t even tell you the last time when I went even a week without a stuffy nose at least some of the time [even when using nasal steroid MDIs]…  and we’re talking back to childhood… If the nose is stuffy it forces you to breath thru the mouth, meaning incoming air to the lungs is not filtered, humidified, and warmed. There are reports asthmatics with poorly controlled rhinitis or sinusitis tend to have hard to control asthma. See:

Yep… Do you notice that symptoms improve on days you don’t go to work?

Yes.   Stat improving within a few hours of not being at work, in fact. I have missed several days of work already due to being sick, and have been told that if I miss any more I will loose my job. You could try to get state or federal OSHA to investigate.

I am considering that. There has to be some kind of OSHA regulation that would protect workers from air contaminants…  I hope… You could try wearing an N95 mask to filter mold (but it wouldn’t filter chemical odors, charcoal filter needed for that). Link:

I have an N95 mask, and it works relatively well in the one building on campus that I cannot otherwise go into — it is very badly mold and mildew contaminated.  Granted, it is NOT 100% [I still have breathing problems -- but they take longer to get to a point where they are problematic, vs. not wearing the mask], and the mask drives me crazy…  But it is better than the alternative. However, in my job I interface with the public all day long — on the phone and in person.  Wearing a mask is not feasible [sound distortion among other things], and I doubt that my employer would *permit* me to wear it [sound distortion + appearance]. If you controlled the rhinitis you could breath thru your nose instead of mouth and better filter out particular contaminants before they got to lungs.

*nods* SW.

Response:

Tell the doctor/staff that you’re uninsured and that you are going to pay your bill. Most will ask for payment at the time of service (as they should). Most will also work out payment plans. In our case we will go a long way to help patients out who have difficulty paying (one of my patient owes me $14,300 and we set up a $20/month payment plan). We do expect patients to make an effort to pay though even if only a small amount. We’ll try to adjust the level of service (limited only by patient safety) and will delay or limit or trim testing as needed. Sometimes testing can be arranged through the hospital instead of the office to avoid some charges since hospitals frequently have indigent funds for this purpose. Anyway, a new patient evaluation in the US would typically cost anywhere from $100-200 for the actual initial doctor visit (30-60 minutes). A simple spirometry is something like $100 while complete PFT’s (not always necessary) might run $400 or so. Laboratory (blood) testing would almost never be needed in the evaluation of asthma. Subsequent visits usually would run from $30-90 depending on acuity level etc. Pulmonologists use the same CPT codes for billing that GP’s do but consultations are paid better than follow-up visits so the first visit is generally the most expensive while subsequent care would be close to what you pay a primary care doctor. Doctors have some leeway in setting prices but not as much as you’d think – no matter what I put down as my prices, the insurers and medicare/medicaid decide what I’m really getting paid. We generally try to set the "asking price" to close to what the better insurance companies are willing to pay. We also have statistics on prices in our zip code that tell us where we are, percentile wise compared to the rest of the local market with the idea that you don’t want to be the cheapest or the most expensive in the market. A question for the group…. How much does a typical first time visit to a pulmonologist/other asthma specialist cost?

– Don Elton Columbia, SC http://www.midcarolina.org

Response:

- Hide quoted text — Show quoted text – After reading your post, I wonder if you have sinusitis or rhinitis. You mention taking antihistamines, apparently for nasal congestion. However nasal congestion is now more Probably both, yes…  though with the antihistamine [which also has a decongestant], it is hard to tell, since it makes most of the symptoms go away.  But if I fall asleep without taking it, as I did the other night — I wake up with a VERY stuffy nose. And right now my nose is stuffy and my cheeks hurt in the way they do when I have a lot of sinus congestion. The antihistamines are also taken for other allergy symptoms — to help the asthma if it does at all, and to help eczema and hives and itchiness. commonly treated with nasal sprays; Nasalcrom and steroid ones like Rhinocort and Flonase. I’m sure you know sinusitis I use Nasalcrom, and it helps a fiar bit.  The steroid sprays I have been on in the past caused nosebleeds, among other side effects. Actually have not used a nasal steroid spray in years as a result… It may be something to consider again, though, esp now with things like Rhinocort in DPI form… Hmmm…  a question resulting from that — if you are using a nasal steroid spray AND an oral inhaled steroid [i.e. for asthma] — how does the total dosing work out?  presumably some of the nasal spray/MDI makes it into the lungs — does it count or is it just not enough to make a significant difference??

I think the nose filters out most of the nasal steroid spray; after all nature intended the nose to filter out dust particles, etc. I once had an internist who thought that oral inhaled steroids could also help alleviate nasal symptoms due to some of the steroid particles being exhaled back out thru the nose. I never found a significant effect from this. It is important to always breath thru the nose to filter, warm, and humidify the air before it reaches the lungs. My nose is usually too stuffy to breathe through it… I couldn’t even tell you the last time when I went even a week without a stuffy nose at least some of the time [even when using nasal steroid MDIs]…  and we’re talking back to childhood…

If the nose is stuffy it forces you to breath thru the mouth, meaning incoming air to the lungs is not filtered, humidified, and warmed. There are reports asthmatics with poorly controlled rhinitis or sinusitis tend to have hard to control asthma. See: http://www.ama-assn.org/special/asthma/newsline/reuters/11187171.htm Asthma and allergic rhinitis appear closely linked Excerpt: "WESTPORT, Nov 18 (Reuters Health) – Asthma and allergic rhinitis  often coexist and their similarities outweigh their differences,  according to a review of the subject by Dr. F. Estelle R. Simons  of the University of Manitoba, Winnipeg, Canada. "Rhinitis…may contribute significantly to asthma symptoms,  and uncontrolled allergic rhinitis may lead to worsening of  coexisting asthma," Dr. Simons says. The key to managing both asthma and allergic rhinitis, she  observes, "…is prevention and relief of chronic allergic  inflammation in both the upper and the lower airways." This  is best achieved not only by "…appropriate pharmacologic  treatment but also by recommending allergen avoidance and,  in selected patients, specific immunotherapy."  " – Hide quoted text — Show quoted text – One thing I am wondering is if my work may be causing the proble…  I began work a few weeks ago… and the second week of work was when I started getting sick… Today I noticed what to me was a strong mold smell in the air, especially in areas closer to the ventillation system.  The building is new, but from my co-workers I have learned that every time it rains EVERYONE can smell the mold/mildew in the air for a couple of days. It hasn’t rained lately… but today I could smell that smell VERY strongly.  And my breathing got worse and my chest and throat hurt more… and by the end of the day I was starting to lose my voice… Coincidence/  MAybe….  But I am wondering… My supervisor, whose desk is right next to mine, has said that each day he comes in to work he feels find until after he has been at work for 20-30 min or so… then he starts getting a stuffy nose and feeling sickly…  It began when he started working there 7 months ago, and happens pretty much every day — and those days after rain it is MUCH MUCH worse… So…  I am seriously wondering if the problem is the air at work… Mold/mildew IS a powerful trigger for my allergies and especially asthma. If it is the problem… other than quitting work, what are my options to explore? FWIW, the building is a brand new building [<3 years old] on a state university campus — so it is state property.  I am a student employee of the university [and therfore state]. Ideas?   SW.

Do you notice that symptoms improve on days you don’t go to work? You could try to get state or federal OSHA to investigate. You could try wearing an N95 mask to filter mold (but it wouldn’t filter chemical odors, charcoal filter needed for that). Link: http://www.njc.org/MSU/15n2MSU_Resp_Protect.html Personal Respiratory Protection ‘97, NJC Excerpt: "Most respirators recommended for protection against TB are  air-purifying respirators like the disposable N95, a negative-pressure particulate respirator that is most commonly used in healthcare settings because of its unintimidating appearance, low cost, and practicality. A major disadvantage, however, of the N95 is the difficulty in assuring a reliable face-mask seal with each use." http://www.mmm.com/product/index_F/index_F_133.html Filter,  3M(TM) Filtrete(TM) Micro Particle and Allergen Reduction If you controlled the rhinitis you could breath thru your nose  instead of mouth and better filter out particular  contaminants before they got to lungs. Ellis

Response:

Don, Thanks for your informative reply! SW.

Response:

Joan – How much does a typical first time visit to a pulmonologist/other asthma specialist cost? I went to see a pulmonologist this past March. He wanted a chest x-ray and spriometry before and after albuterol. The entire visit cost me about $475. This was a first-time visit.

Thanks! SW.

Response:

After reading your post, I wonder if you have sinusitis or rhinitis. You mention taking antihistamines, apparently for nasal congestion. However nasal congestion is now more

Probably both, yes…  though with the antihistamine [which also has a decongestant], it is hard to tell, since it makes most of the symptoms go away.  But if I fall asleep without taking it, as I did the other night — I wake up with a VERY stuffy nose. And right now my nose is stuffy and my cheeks hurt in the way they do when I have a lot of sinus congestion. The antihistamines are also taken for other allergy symptoms — to help the asthma if it does at all, and to help eczema and hives and itchiness. commonly treated with nasal sprays; Nasalcrom and steroid ones like Rhinocort and Flonase. I’m sure you know sinusitis

I use Nasalcrom, and it helps a fiar bit.  The steroid sprays I have been on in the past caused nosebleeds, among other side effects. Actually have not used a nasal steroid spray in years as a result… It may be something to consider again, though, esp now with things like Rhinocort in DPI form… Hmmm…  a question resulting from that — if you are using a nasal steroid spray AND an oral inhaled steroid [i.e. for asthma] — how does the total dosing work out?  presumably some of the nasal spray/MDI makes it into the lungs — does it count or is it just not enough to make a significant difference?? It is important to always breath thru the nose to filter, warm, and humidify the air before it reaches the lungs.

My nose is usually too stuffy to breathe through it… I couldn’t even tell you the last time when I went even a week without a stuffy nose at least some of the time [even when using nasal steroid MDIs]…  and we’re talking back to childhood… Another condition that can cause hard to treat asthma is GERD, which has been extensively discussed in other posts.

If I do have it, it is entirely unsymptomatic in terms of traditional symptoms… As far as the cost of a pulmonologist, that would vary from

*nods* thanks for your best guess. Another thought is you might have a viral lung disease, like acute bronchitis.

I have thought of this… some kind of RI or URI… but I don’t have the normal constellation of symptoms that I get when I get them… so am not sure. One thing I am wondering is if my work may be causing the proble…  I began work a few weeks ago… and the second week of work was when I started getting sick… Today I noticed what to me was a strong mold smell in the air, especially in areas closer to the ventillation system.  The building is new, but from my co-workers I have learned that every time it rains EVERYONE can smell the mold/mildew in the air for a couple of days. It hasn’t rained lately… but today I could smell that smell VERY strongly.  And my breathing got worse and my chest and throat hurt more… and by the end of the day I was starting to lose my voice… Coincidence/  MAybe….  But I am wondering… My supervisor, whose desk is right next to mine, has said that each day he comes in to work he feels find until after he has been at work for 20-30 min or so… then he starts getting a stuffy nose and feeling sickly…  It began when he started working there 7 months ago, and happens pretty much every day — and those days after rain it is MUCH MUCH worse… So…  I am seriously wondering if the problem is the air at work… Mold/mildew IS a powerful trigger for my allergies and especially asthma. If it is the problem… other than quitting work, what are my options to explore? FWIW, the building is a brand new building [<3 years old] on a state university campus — so it is state property.  I am a student employee of the university [and therfore state]. Ideas? SW.

Response:

As no one has mentioned a price for a pulmonologist, I guess I will volunteer mine.  His normal office visit is $45.00 which for me is cheaper then the family doctor who charges $65.00… this makes absolutely no sense to me.  Of course, allergy testing was additional to the price but the pulmonogist I go to is really great about giving out plenty of sample inhalers and such.   As far as something going ’round like a virus or something, is funny you should mention that.  Today, I was at work and I work in open buildings so I noticed the smell of smoke from someone’s outdoor burning or chimneys… who knows!  Almost as soon as I smelled it, I had already felt my chest feeling heavy and like I was getting a cold or something.  This was of course, the good ol’ lungs telling me YECKY SMOKE!!   Since I have been taking flovent and even with the reduction of it, I still feel it taking effect.  Am on only one puff of the Flovent 110 2x’s a day and is great stuff.  I am also still on the normal servent dosage and singulair at night but the Proventil is only used for time such as the smoke becomes unavoidable or other triggers get in the way. I wish everyone felt almost as good as I feel. Is unpredicatable though.   As far as how you are feeling, I know when I had infections, either lung or sinus ones… the asthma becomes a real chronic pain in the butt.  Seems one moment i feel better and the next, errrrrrr!!  I found out that I have a very slow immune system and is taking twice as long for me to fight off infections so when I think I am rid of one, I generally need a longer healing time amd more antibiotic.   I hope you feel better soon.  Am sure are many here on this newsgroup nodding there heads in acknowledgment to how you feel.   Best wishes!! Always, pam But I have not been going to church as I am really paranoid about going back when there are so many people there!  Re: perfumes, etc. Was thinking to, whenever – Hide quoted text — Show quoted text -A question for the group…. How much does a typical first time visit to a pulmonologist/other asthma specialist cost? It looks like I may have no choice but to go to one, as my asthma is doing strange things [er, like PFs dropping into the 40-50% range and then *staying* there and not reversing very well at all... and yet I am not having an 'active' fullblown asthma attack... something they have not done in all the time that I have been monitoring my PFs]… I am back on a pred taper [well, a revised pred taper... went on a 60-60-60-40-40-40-20-20-20mg deltasone taper and was doing reasonably better (PFs occasionally getting above 80%, but really still living in the 60-80% range) until the second day of 20mg/d, when they dropped again... Yesterday  I actually blew a 375 in the MDs office (which is about 60% for me), the lowest I ever did there, and earlier in the day my PFs hit 250 (er, 310 = 50%)...  So we changed the pred taper to start on that day [day 3 of 20 which was the last day from the first taper] with 40mg/d, which I am to do for five days, followed by five days at 20…    We have also dropped my Pulmicort to 1200 mcg/d because my MD is very concerned about the dose being so high AND being above the recommended maximum dose [which is 1600 mcg/d]. Along with all this at the beginning of the first pred taper I had some meds changed:  continue on what I was already on [Pulmicort 2000 mcg/d, Intal MDI 2 puffs 4x/d] and add Serevent MDI 2 puffs 2x/d, and change antihistamine from Zyrtec [which was working very poorly] to Trinalin {which is azatadine AND pseudoephedrine) 120 mg 2x/d. So, current meds: Pulmicort Turbuhaler – 1200 mcg/d [that is 6 puffs/d] Servent MDI –              2 puffs, 2 times a day Intal MDI –                   2 puffs, 4 times a day Trinalin –                      1 tablet twice a day Deltasone –                 40 mg/d for 5 days [this being                                   day 2], then 20mg/d for 5 days. My MD is concerned and uncomfortable. I am concerned and uncomfortable.  My MD wants to be able ‘to sleep at night’ wrt the meds we prescribe me. To add to this — for the last almost week and a half I have felt on and off like I was coming down with a cold.  you know, your ears start to hurt, or your throat gets soe, or your nose gets that funny sorish I am about to get a cold feeling.  The symptoms might last for 24 hours or so, but not really get worse in that time… then the next morning I woud wake up and they woudl be gone… though the asthma would still be messed up.  the cold never materialized.  BTW — the asthma ‘flare’ or whatever the heck you want to call it began a day or so before the first ‘cold’ symptoms… with a gradual decline in PFs and n=increased SOB doing normal things, like walking from place to place. Now, after telling him about how I was feeling, one of my friends has said that some kind of viral thing like this is going around — people will feel like they are coming down with a cold then it seems to clear up and they go thrugh this cycle for a few weeks, never becoming outright obviously "sick".  Whether this is true or not, and if so what exactly it might be, I have no clue…  Anyone know if there is something like that going around?? today both of my ears hurt, my nose is stuffy, my head hurts, my chest has been hurting for the last couple hours, and my peak flows are doing their charming best to aggravate me.  I get SOB walking down the hall to another part of this building.  Going outside results in noticeable SOB and even a little bit of wheezing [something I normally only very rarely do!] and a measurable drop in PF by the time I walk across the street. I cant say if my ‘allergies’ [hay fever, eczema and such] are ‘bad’ right now, because the Trinalin is working nicely…  though I fell asleep without taking it last night and this morning woke up very congested, so perhaps it is working.  I really don’t want to stop taking it to see if the other allergy symptoms come back or not…  So that indicator is kind of not there due to the change in meds. Allergens here lately have been "high" for weeds and molds, low-high for grasses and pollens, depending on the day. Maybe I have a virus or critter of some kind… maybe it is allergies… maybe both…  don;t know, and can’t tell since I don’t seem to stay "sick" outside of the asthma itself for long enough to tell… Anyhow, I am babbling… I feel miserable.  And am actually… well, scared maybe isn’t the right word… but concerned… i a way very different than even when having a severe attack [the meds usually work at least then and I can feel that I getting better ].  But I am not used to this kind of creeping not getting well/getting worse. I have had asthma since I was 14; now, over a dozen years later, it is doing things it never used to do.  Since November of 1998 I have been on prednisone more times [and for longer in total # of days] than in my entirre LIFE prior to that — including 20 days out of the month of Nov 1998, and 25 days straight in May 1999, plus numerous shorter bursts in between.  I got a Kenalog shot for the first time in August 1998, and then one again in the early winter of 99. Since May 1999 I have had a couple of short [couple day] non-taper bursts, until now. I guess, looking back, I had worse problems when I first developed asthma — actually NEEDING a Ventolin neb Tx every 4 hours or so… But at least then I had active attacks…  hm… don;t know how to describe it….  But different from now… very different. Now it is this creeping problem…  VERY low default peak flows that just sit there and don’t reverse well…  My personal best PF is 620. My ‘normal’ when I am doing really well is around 580-600; we’ll say 580 for argument’s sake.  if I am doing above 550 I am pleased Dropping into the 400’s means meds need changing, and usually occurs when I am having more active problems — I will get SOB easier, have active attacks, have other allergy symptoms, come down with a URI, etc etc…  PFs into the 300’s for me just don’t happen unless I am having an actual attack… or at least have not happened that I have measured since 1990 when I first began monitoring my PFs [as part of a drug study].  Going BELOW 300 also has not happened unless I have been in a fullblown attack — and when it did I was in *severe* distress. But now I have had a PF at 250 and not felt like I was in an active attack… well, ok, I could only speak in short phrases/partial sentences at the time…  but… oh, how to describe it… it was DIFFERENT… And my PFs were 375 in the MDs office [I had been hoping that maybe my PF meter was messed up... evidently it is not ( ], but again though I was mildly SOB and couldn’t walk across the street without becoming much more SOB and having the equivalent of what for me is a ‘mild attack’…  well, it was still very different… not what I am used to… argh… i guess i am just needing to vent and ramble here… I would love comments/insight/questions etc from all of you [except for the Buteyko people and those wishing to sell me the latest and greatest wonder cure, please!! ]. And back to the original question/reason for this post… If this taper does’t work, my MD *IS* sending me to a specialist <that sleeping at night thing … and I agree with that… BUT, I have ZERO insurance… Meds are already $450 a month, which is a not-insignificant expense [heck, it is more than car payment + car insurance combined!!]. So I am wondering how much I might expect to have to pay out of pocket to see the specialist [including labwork that might be done, I guess, too]…. And will US doctors let you pay over time or do you have to pay up front???

… read more »

Response:

Now, after telling him about how I was feeling, one of my friends has said that some kind of viral thing like this is going around — people will feel like they are coming down with a cold then it seems to clear up and they go thrugh this cycle for a few weeks, never becoming outright obviously "sick".  Whether this is true or not, and if so what exactly it might be, I have no clue…  Anyone know if there is something like that going around??

My guess would be RSV.  It is going around where I live and typically makes the rounds in the winter.  It is a nasty virus that according to our Ped "can make a non-asthmatic wheeze."  He said that when he was listening to my one year old asthmatic son (who has RSV) wheeze. My husband and I both have had RSV for the past month or so too.  I wheezed for about a week.  I do not have asthma and never wheezed before in my life. It is a nasty virus. Hope you feel better. Edie

Response:

A question for the group…. How much does a typical first time visit to a pulmonologist/other asthma specialist cost?

I went to see a pulmonologist this past March. He wanted a chest x-ray and spriometry before and after albuterol. The entire visit cost me about $475. This was a first-time visit. Joan

Response:

- Hide quoted text — Show quoted text – A question for the group…. How much does a typical first time visit to a pulmonologist/other asthma specialist cost? It looks like I may have no choice but to go to one, as my asthma is doing strange things [er, like PFs dropping into the 40-50% range and then *staying* there and not reversing very well at all... and yet I am not having an 'active' fullblown asthma attack... something they have not done in all the time that I have been monitoring my PFs]… I am back on a pred taper [well, a revised pred taper... went on a 60-60-60-40-40-40-20-20-20mg deltasone taper and was doing reasonably better (PFs occasionally getting above 80%, but really still living in the 60-80% range) until the second day of 20mg/d, when they dropped again...  Yesterday  I actually blew a 375 in the MDs office (which is about 60% for me), the lowest I ever did there, and earlier in the day my PFs hit 250 (er, 310 = 50%)...  So we changed the pred taper to start on that day [day 3 of 20 which was the last day from the first taper] with 40mg/d, which I am to do for five days, followed by five days at 20…    We have also dropped my Pulmicort to 1200 mcg/d because my MD is very concerned about the dose being so high AND being above the recommended maximum dose [which is 1600 mcg/d]. Along with all this at the beginning of the first pred taper I had some meds changed:  continue on what I was already on [Pulmicort 2000 mcg/d, Intal MDI 2 puffs 4x/d] and add Serevent MDI 2 puffs 2x/d, and change antihistamine from Zyrtec [which was working very poorly] to Trinalin {which is azatadine AND pseudoephedrine) 120 mg 2x/d. So, current meds: Pulmicort Turbuhaler – 1200 mcg/d [that is 6 puffs/d] Servent MDI –              2 puffs, 2 times a day Intal MDI –                   2 puffs, 4 times a day Trinalin –                      1 tablet twice a day Deltasone –                 40 mg/d for 5 days [this being                                    day 2], then 20mg/d for 5 days.

After reading your post, I wonder if you have sinusitis or rhinitis. You mention taking antihistamines, apparently for nasal congestion. However nasal congestion is now more commonly treated with nasal sprays; Nasalcrom and steroid ones like Rhinocort and Flonase. I’m sure you know sinusitis is one of the major causes of hard to treat asthma. Sinusitis is diagnosed with CT scan (xray) of head. It is important to always breath thru the nose to filter, warm, and humidify the air before it reaches the lungs. Another condition that can cause hard to treat asthma is GERD, which has been extensively discussed in other posts. As far as the cost of a pulmonologist, that would vary from one part of the country to another; and one visit would be unlikely to solve anything. Also lung function tests may be prescribed, an additional cost. And not all pulmonologists are good asthma doctors. OK, I’ll make a guess; $300 in Calif. Texas should be less. Going to a large clinic or teaching institution is probably best. Another thought is you might have a viral lung disease, like acute bronchitis. And for severe intractable asthma and other lung conditions, the best place to go is National Jewish Center in Denver; they do accept patients who can’t pay. believe you stay there for around 4 days for various tests [A1AD, immune deficiencies, steroid resistance, etc]. 1-800-222-LUNG (nurses answer questions)  My .02 worth, Ellis – Hide quoted text — Show quoted text – My MD is concerned and uncomfortable. I am concerned and uncomfortable.  My MD wants to be able ‘to sleep at night’ wrt the meds we prescribe me. To add to this — for the last almost week and a half I have felt on and off like I was coming down with a cold.  you know, your ears start to hurt, or your throat gets soe, or your nose gets that funny sorish I am about to get a cold feeling.  The symptoms might last for 24 hours or so, but not really get worse in that time… then the next morning I woud wake up and they woudl be gone… though the asthma would still be messed up.  the cold never materialized.  BTW — the asthma ‘flare’ or whatever the heck you want to call it began a day or so before the first ‘cold’ symptoms… with a gradual decline in PFs and n=increased SOB doing normal things, like walking from place to place. Now, after telling him about how I was feeling, one of my friends has said that some kind of viral thing like this is going around — people will feel like they are coming down with a cold then it seems to clear up and they go thrugh this cycle for a few weeks, never becoming outright obviously "sick".  Whether this is true or not, and if so what exactly it might be, I have no clue…  Anyone know if there is something like that going around?? today both of my ears hurt, my nose is stuffy, my head hurts, my chest has been hurting for the last couple hours, and my peak flows are doing their charming best to aggravate me.  I get SOB walking down the hall to another part of this building.  Going outside results in noticeable SOB and even a little bit of wheezing [something I normally only very rarely do!] and a measurable drop in PF by the time I walk across the street. I cant say if my ‘allergies’ [hay fever, eczema and such] are ‘bad’ right now, because the Trinalin is working nicely…  though I fell asleep without taking it last night and this morning woke up very congested, so perhaps it is working.  I really don’t want to stop taking it to see if the other allergy symptoms come back or not…  So that indicator is kind of not there due to the change in meds. Allergens here lately have been "high" for weeds and molds, low-high for grasses and pollens, depending on the day. Maybe I have a virus or critter of some kind… maybe it is allergies… maybe both…  don;t know, and can’t tell since I don’t seem to stay "sick" outside of the asthma itself for long enough to tell… Anyhow, I am babbling… I feel miserable.  And am actually… well, scared maybe isn’t the right word… but concerned… i a way very different than even when having a severe attack [the meds usually work at least then and I can feel that I getting better ].  But I am not used to this kind of creeping not getting well/getting worse. I have had asthma since I was 14; now, over a dozen years later, it is doing things it never used to do.  Since November of 1998 I have been on prednisone more times [and for longer in total # of days] than in my entirre LIFE prior to that — including 20 days out of the month of Nov 1998, and 25 days straight in May 1999, plus numerous shorter bursts in between.  I got a Kenalog shot for the first time in August 1998, and then one again in the early winter of 99. Since May 1999 I have had a couple of short [couple day] non-taper bursts, until now. I guess, looking back, I had worse problems when I first developed asthma — actually NEEDING a Ventolin neb Tx every 4 hours or so… But at least then I had active attacks…  hm… don;t know how to describe it….  But different from now… very different. Now it is this creeping problem…  VERY low default peak flows that just sit there and don’t reverse well…  My personal best PF is 620. My ‘normal’ when I am doing really well is around 580-600; we’ll say 580 for argument’s sake.  if I am doing above 550 I am pleased Dropping into the 400’s means meds need changing, and usually occurs when I am having more active problems — I will get SOB easier, have active attacks, have other allergy symptoms, come down with a URI, etc etc…  PFs into the 300’s for me just don’t happen unless I am having an actual attack… or at least have not happened that I have measured since 1990 when I first began monitoring my PFs [as part of a drug study].  Going BELOW 300 also has not happened unless I have been in a fullblown attack — and when it did I was in *severe* distress. But now I have had a PF at 250 and not felt like I was in an active attack… well, ok, I could only speak in short phrases/partial sentences at the time…  but… oh, how to describe it… it was DIFFERENT… And my PFs were 375 in the MDs office [I had been hoping that maybe my PF meter was messed up... evidently it is not ( ], but again though I was mildly SOB and couldn’t walk across the street without becoming much more SOB and having the equivalent of what for me is a ‘mild attack’…  well, it was still very different… not what I am used to… argh… i guess i am just needing to vent and ramble here… I would love comments/insight/questions etc from all of you [except for the Buteyko people and those wishing to sell me the latest and greatest wonder cure, please!! ]. And back to the original question/reason for this post… If this taper does’t work, my MD *IS* sending me to a specialist <that sleeping at night thing … and I agree with that… BUT, I have ZERO insurance… Meds are already $450 a month, which is a not-insignificant expense [heck, it is more than car payment + car insurance combined!!]. So I am wondering how much I might expect to have to pay out of pocket to see the specialist [including labwork that might be done, I guess, too]…. And will US doctors let you pay over time or do you have to pay up front??? Thanks for any replies! SW.

Response:

A question for the group…. How much does a typical first time visit to a pulmonologist/other asthma specialist cost? It looks like I may have no choice but to go to one, as my asthma is doing strange things [er, like PFs dropping into the 40-50% range and then *staying* there and not reversing very well at all... and yet I am not having an 'active' fullblown asthma attack... something they have not done in all the time that I have been monitoring my PFs]… I am back on a pred taper [well, a revised pred taper... went on a 60-60-60-40-40-40-20-20-20mg deltasone taper and was doing reasonably better (PFs occasionally getting above 80%, but really still living in the 60-80% range) until the second day of 20mg/d, when they dropped again...  Yesterday  I actually blew a 375 in the MDs office (which is about 60% for me), the lowest I ever did there, and earlier in the day my PFs hit 250 (er, 310 = 50%)...  So we changed the pred taper to start on that day [day 3 of 20 which was the last day from the first taper] with 40mg/d, which I am to do for five days, followed by five days at 20…    We have also dropped my Pulmicort to 1200 mcg/d because my MD is very concerned about the dose being so high AND being above the recommended maximum dose [which is 1600 mcg/d]. Along with all this at the beginning of the first pred taper I had some meds changed:  continue on what I was already on [Pulmicort 2000 mcg/d, Intal MDI 2 puffs 4x/d] and add Serevent MDI 2 puffs 2x/d, and change antihistamine from Zyrtec [which was working very poorly] to Trinalin {which is azatadine AND pseudoephedrine) 120 mg 2x/d. So, current meds: Pulmicort Turbuhaler – 1200 mcg/d [that is 6 puffs/d] Servent MDI –              2 puffs, 2 times a day Intal MDI –                   2 puffs, 4 times a day Trinalin –                      1 tablet twice a day Deltasone –                 40 mg/d for 5 days [this being                                    day 2], then 20mg/d for 5 days. My MD is concerned and uncomfortable. I am concerned and uncomfortable.  My MD wants to be able ‘to sleep at night’ wrt the meds we prescribe me. To add to this — for the last almost week and a half I have felt on and off like I was coming down with a cold.  you know, your ears start to hurt, or your throat gets soe, or your nose gets that funny sorish I am about to get a cold feeling.  The symptoms might last for 24 hours or so, but not really get worse in that time… then the next morning I woud wake up and they woudl be gone… though the asthma would still be messed up.  the cold never materialized.  BTW — the asthma ‘flare’ or whatever the heck you want to call it began a day or so before the first ‘cold’ symptoms… with a gradual decline in PFs and n=increased SOB doing normal things, like walking from place to place. Now, after telling him about how I was feeling, one of my friends has said that some kind of viral thing like this is going around — people will feel like they are coming down with a cold then it seems to clear up and they go thrugh this cycle for a few weeks, never becoming outright obviously "sick".  Whether this is true or not, and if so what exactly it might be, I have no clue…  Anyone know if there is something like that going around?? today both of my ears hurt, my nose is stuffy, my head hurts, my chest has been hurting for the last couple hours, and my peak flows are doing their charming best to aggravate me.  I get SOB walking down the hall to another part of this building.  Going outside results in noticeable SOB and even a little bit of wheezing [something I normally only very rarely do!] and a measurable drop in PF by the time I walk across the street. I cant say if my ‘allergies’ [hay fever, eczema and such] are ‘bad’ right now, because the Trinalin is working nicely…  though I fell asleep without taking it last night and this morning woke up very congested, so perhaps it is working.  I really don’t want to stop taking it to see if the other allergy symptoms come back or not…  So that indicator is kind of not there due to the change in meds. Allergens here lately have been "high" for weeds and molds, low-high for grasses and pollens, depending on the day. Maybe I have a virus or critter of some kind… maybe it is allergies… maybe both…  don;t know, and can’t tell since I don’t seem to stay "sick" outside of the asthma itself for long enough to tell… Anyhow, I am babbling… I feel miserable.  And am actually… well, scared maybe isn’t the right word… but concerned… i a way very different than even when having a severe attack [the meds usually work at least then and I can feel that I getting better ].  But I am not used to this kind of creeping not getting well/getting worse. I have had asthma since I was 14; now, over a dozen years later, it is doing things it never used to do.  Since November of 1998 I have been on prednisone more times [and for longer in total # of days] than in my entirre LIFE prior to that — including 20 days out of the month of Nov 1998, and 25 days straight in May 1999, plus numerous shorter bursts in between.  I got a Kenalog shot for the first time in August 1998, and then one again in the early winter of 99. Since May 1999 I have had a couple of short [couple day] non-taper bursts, until now. I guess, looking back, I had worse problems when I first developed asthma — actually NEEDING a Ventolin neb Tx every 4 hours or so… But at least then I had active attacks…  hm… don;t know how to describe it….  But different from now… very different. Now it is this creeping problem…  VERY low default peak flows that just sit there and don’t reverse well…  My personal best PF is 620. My ‘normal’ when I am doing really well is around 580-600; we’ll say 580 for argument’s sake.  if I am doing above 550 I am pleased Dropping into the 400’s means meds need changing, and usually occurs when I am having more active problems — I will get SOB easier, have active attacks, have other allergy symptoms, come down with a URI, etc etc…  PFs into the 300’s for me just don’t happen unless I am having an actual attack… or at least have not happened that I have measured since 1990 when I first began monitoring my PFs [as part of a drug study].  Going BELOW 300 also has not happened unless I have been in a fullblown attack — and when it did I was in *severe* distress. But now I have had a PF at 250 and not felt like I was in an active attack… well, ok, I could only speak in short phrases/partial sentences at the time…  but… oh, how to describe it… it was DIFFERENT… And my PFs were 375 in the MDs office [I had been hoping that maybe my PF meter was messed up... evidently it is not ( ], but again though I was mildly SOB and couldn’t walk across the street without becoming much more SOB and having the equivalent of what for me is a ‘mild attack’…  well, it was still very different… not what I am used to… argh… i guess i am just needing to vent and ramble here… I would love comments/insight/questions etc from all of you [except for the Buteyko people and those wishing to sell me the latest and greatest wonder cure, please!! ]. And back to the original question/reason for this post… If this taper does’t work, my MD *IS* sending me to a specialist <that sleeping at night thing … and I agree with that… BUT, I have ZERO insurance… Meds are already $450 a month, which is a not-insignificant expense [heck, it is more than car payment + car insurance combined!!]. So I am wondering how much I might expect to have to pay out of pocket to see the specialist [including labwork that might be done, I guess, too]…. And will US doctors let you pay over time or do you have to pay up front??? Thanks for any replies! SW.

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Question:

So 2 years ago i was diagnosed with having asthma.  I have been in the hospital about 5 time sense then.  Yeah I am often non-complient with my medications and my asthma plan.  My sister died from asthma and I am very resentful for having to deal with it.  My doctor sent me to an allergist whom was a bit harsh on me on our first meeting.  He did get me to take my flovent (220 2 puffs twice a day) for the two weeks until my next apointment to get my RAST resaults.  I was doing well with my asthma until 2 days before the apointment when my PEFR dropped into my yellow zone.     So at my apointment I found out that I was severly allergic to many many things (on a scale of 0 to 6, 6 being the worst, over half the resaults were 6).  I tested positive for everything.  He gave me a poor prognosis.  He said environmental contorls would offer minimal help, I should continue to take the 6 medications I was on and allergy shots might help but would take over two years to show a diffrence.  He said I will only get worse and my lungs wont stand it too much longer and will give out.     I have been crying for 3 days now.  I just dont know what to do.  I dont have much money, the meds are too expensive and I just flat out dont want to take anymore.  I travel alot, shots would be unlikely to be consistant.  I would be very willing to try dietary modifications, anything that I could control like that.     Emotionally and physically I need help and don’t know where to get it.  Could this doctor be right?  Do I have no choices in my treatment? And what should I do? Carrie

Response:

– Hide quoted text — Show quoted text – So 2 years ago i was diagnosed with having asthma.  I have been in the hospital about 5 time sense then.  Yeah I am often non-complient with my medications and my asthma plan.  My sister died from asthma and I am very resentful for having to deal with it.  My doctor sent me to an allergist whom was a bit harsh on me on our first meeting.  He did get me to take my flovent (220 2 puffs twice a day) for the two weeks until my next apointment to get my RAST resaults.  I was doing well with my asthma until 2 days before the apointment when my PEFR dropped into my yellow zone.    So at my apointment I found out that I was severly allergic to many many things (on a scale of 0 to 6, 6 being the worst, over half the resaults were 6).  I tested positive for everything.  He gave me a poor prognosis.  He said environmental contorls would offer minimal help, I should continue to take the 6 medications I was on and allergy shots might help but would take over two years to show a diffrence.  He said I will only get worse and my lungs wont stand it too much longer and will give out.    I have been crying for 3 days now.  I just dont know what to do.  I dont have much money, the meds are too expensive and I just flat out dont want to take anymore.  I travel alot, shots would be unlikely to be consistant.  I would be very willing to try dietary modifications, anything that I could control like that.    Emotionally and physically I need help and don’t know where to get it.  Could this doctor be right?  Do I have no choices in my treatment? And what should I do?

1.  Get another allergist; there are always ways to minimize exposure. 2.  Get a decent treatment plan and FOLLOW it. 3.  Get some counseling; reactions such as yours aren’t rare, but they sure are counter-productive . . . unfortunately with asthma they can also be fatal. Chris Owens

Response:

Get another MD.  and fast. That one is a jerk. – Hide quoted text — Show quoted text – So 2 years ago i was diagnosed with having asthma.  I have been in the hospital about 5 time sense then.  Yeah I am often non-complient with my medications and my asthma plan.  My sister died from asthma and I am very resentful for having to deal with it.  My doctor sent me to an allergist whom was a bit harsh on me on our first meeting.  He did get me to take my flovent (220 2 puffs twice a day) for the two weeks until my next apointment to get my RAST resaults.  I was doing well with my asthma until 2 days before the apointment when my PEFR dropped into my yellow zone.     So at my apointment I found out that I was severly allergic to many many things (on a scale of 0 to 6, 6 being the worst, over half the resaults were 6).  I tested positive for everything.  He gave me a poor prognosis.  He said environmental contorls would offer minimal help, I should continue to take the 6 medications I was on and allergy shots might help but would take over two years to show a diffrence.  He said I will only get worse and my lungs wont stand it too much longer and will give out.     I have been crying for 3 days now.  I just dont know what to do.  I dont have much money, the meds are too expensive and I just flat out dont want to take anymore.  I travel alot, shots would be unlikely to be consistant.  I would be very willing to try dietary modifications, anything that I could control like that.     Emotionally and physically I need help and don’t know where to get it.  Could this doctor be right?  Do I have no choices in my treatment? And what should I do? Carrie

Response:

   Emotionally and physically I need help and don’t know where to get it.  Could this doctor be right?  Do I have no choices in my treatment? And what should I do?

Hi Carrie You could do what thousands have done here in Australia, New Zealand, UK, Europe   Russia and now increasingly in the USA and that is try Buteyko therapy.  I have never yet heard of anyone for whom it has’nt worked.  The only problem for you is that since your asthma has a very substantial allergy component and since this component takes longer to treat than the bronchospasm component, you will have to work quite hard at it and make sure you get some sort of support. Unlike most other treatments, Buteyko therapy is based on solid basic physiology. So  I’m totally baffled as to why there is such a huge amount of opposition to it on this group. Incidentally, I have no commercial interest in Buteyo therapy or anyhting to  do with any treatments. Best wishes Peter Kolb Biomedical Engineer Carrie

FREE INFORMATION ON BUTEYKO’S CURE FOR ASTHMA PROVIDED BY GRATEFUL EX-ASTHMATICS:   http://www.wt.com.au/~pkolb/buteyko.htm

Response:

You always have a choice. Please keep looking to find a allergy/asthma doctor that you can work with. My doctor hates me, because I have 5 pets that I am allergic to (3 of them I had already had when I became allergic to them) and I smoke. I am trying to give up smoking but I will never give up my pets.I am working with him on smoking but he knows my pets stay with me. We have tried many medications to find what works best. Somedays are beter than others but NEVR give up. There are so many medications out there and other solutions. Try drinking a lot of water, staying out of outdoors  when allergy season is in peak, get rid of carpets and curtains. Keep books in a room that you do not sleep in, also stuff animals or anything that might collect dust. BUT NEVER GIVE UP HOPE AND STOP CRYING. Medications are very expensive but read up and find the ones that work best for you. What might work for one person does not mean it will work for you. We are all here for you :} – Hide quoted text — Show quoted text – So 2 years ago i was diagnosed with having asthma.  I have been in the hospital about 5 time sense then.  Yeah I am often non-complient with my medications and my asthma plan.  My sister died from asthma and I am very resentful for having to deal with it.  My doctor sent me to an allergist whom was a bit harsh on me on our first meeting.  He did get me to take my flovent (220 2 puffs twice a day) for the two weeks until my next apointment to get my RAST resaults.  I was doing well with my asthma until 2 days before the apointment when my PEFR dropped into my yellow zone.     So at my apointment I found out that I was severly allergic to many many things (on a scale of 0 to 6, 6 being the worst, over half the resaults were 6).  I tested positive for everything.  He gave me a poor prognosis.  He said environmental contorls would offer minimal help, I should continue to take the 6 medications I was on and allergy shots might help but would take over two years to show a diffrence.  He said I will only get worse and my lungs wont stand it too much longer and will give out.     I have been crying for 3 days now.  I just dont know what to do.  I dont have much money, the meds are too expensive and I just flat out dont want to take anymore.  I travel alot, shots would be unlikely to be consistant.  I would be very willing to try dietary modifications, anything that I could control like that.     Emotionally and physically I need help and don’t know where to get it.  Could this doctor be right?  Do I have no choices in my treatment? And what should I do? Carrie

Response:

! I have never yet heard of anyone for whom it has’nt worked. To be honest, Buteyko wasn’t a fat lot of use.

PS.: I suggest you delay the reviews until you are a little more positive again!  :) No no no no no no no no Peter. I’m not going to let you twist the discussion as you have been doing with Janet and tell me that *I* am the one who has a simplistic view. Those of you who have seriously tried  Buteyko therapy will have derived

a huge benefit from it. I practiced Buteyko as diligently as I was able for 1 year according to the Stark and original Russian protocol, and derived very little actual benefit overall.  I was never able to reduce any of my medications. Buteyko did give me the illusion that I was able to exercise when I was in fact very ill, and I subsequently crashed with CFS caused by mercury poisoning and became unable to support myself. BTW at that point I really *did* develop a cortisol deficit. All those of you who have tried the therapy without adequate supervision,

as well as those of you who have had the benefit of a "crash course",  you are all pioneers exploring something new.  The answers are’nt always written up for you.  You have to do some discovering for yourselves.  Before setting up this information page I was warned that a half baked approach to Buteyko treatment would lead to disenchatment with the technique.  I just hope I’m not going to have been proven wrong on this one. The original discussion had nothing to do with whether or not someone was practicing the correct technique. It really makes me rub my temples in frustration when Buteyko advocates hide behind questions or criticism with the argument "If it is not working for you, you are doing it wrong."  This sounds way too much like the non compliance arguments conventional physicians use to explain the increase in asthma. And it will not work as a response to critics who will ask you to explain in excrutiating detail how Buteyko could possibly work when modern research has already discarded such theories as hyperventilation, and indeed cortisol deficit, in relation to asthma. I practiced Buteyko as diligently as I was able for 1 year according to the Stark and original Russian protocol, and derived very little actual benefit overall.

Yes, Patty, I agree that you have had a difficult time with Buteyko, and I have no doubt that your analysis on Mercury poisoning is correct.  But I think you are a very rare exception and the overwhelming majority of asthmatics who have an asthma problem can heal themselves with Buteyko therapy. The original discussion had nothing to do with whether or not someone was practicing the correct technique. It really makes me rub my temples in frustration when Buteyko advocates hide behind questions or criticism with the argument "If it is not working for you, you are doing it wrong."

Patty,  the point I was trying to make, and which I obviously made very badly, was that Buteyko treatment is very hard to sustain. You are undoubtedly right.  There will be asthmatics with other problems as your case has revealed.  And no amount of Buteyko breathing alone will get rid of your asthma.  These other problems too have to be attended to. And I dare say that adults with a long history of asthma may never get their immune system working properly again. ! I’m totally baffled as to why there is such a huge amount of opposition to it on this group. "Our doctors in Austrlia kill an estimated 10,000 patients a year" Peter Kolb "Finally,  I really want to say a big thanks to Robert and all those people who are presenting their experience with Buteyko on alt.support.asthma.  It is’nt easy when you just keep getting your head kicked by bigots." Peter Kolb "Perhaps I could suggest, Richard, that you as director of this operation, redirect his mail to alt.support.asthma where it would substantially raise the intellectual level of discussion." Peter Kolb "You’ve been writing stupid letters for over a year now.  If you’d only put one tenth of the effort you have put into writing these letters, into trying Butyeko therapy, you too would be without asthma today. Then you could be using your time more productively, helping others get over their asthma instead of running the mindless,  bigoted, totally negative  campaign  we’ve come to expect from you." Peter Kolb On the other hand, I understand that there have been a few scares here in Australia.  I’m not certain of the details, but I believe there may even have been an asthma death for which the Maximum Pause has been blamed. Whatever the incident was, it seems to have sent shockwaves through the Buteyko community and hence the reticence to use it among some practitioners. No, you should’nt feel exhausted, in fact you should feel quite good. Maximum pauses are not necessarily good. Apparently Buteyko has said they can break the respiratory center and make your breathing worse…. permanently. Your pounding heart is a bit of a worry. Remember, if you have any heart problem at all you should’nt be doing MP’s. But treatment for some of the other disorders can be very dangerous, specifically for diabetes.  Diabetics can go into  shock  from biochemical changes brought about by just closing your mouth and breathing through your nose.  People with high blood pressure doing pauses can actually increase blood pressure during the Buteyko exercises because the system goes unstable.

Response:

   Emotionally and physically I need help and don’t know where to get it.  Could this doctor be right?  Do I have no choices in my treatment? And what should I do? Hi Carrie You could do what thousands have done here in Australia, New Zealand, UK, Europe   Russia and now increasingly in the USA and that is try Buteyko therapy.  

Of course the fact that Buteyko has absolutely no scientific basis, and no clinical studies proving efficacy is irrelevant, right? Chris Owens

Response:

<rapturous applause and commendation

Response:

Hi Carrie I’ve to add to Peter’s thoughts I’ve also heard that acupuncture can also work! We haven’t tried this yet on my son, but he is SEVERELY asthmatic as well. Good luck Vicky – Hide quoted text — Show quoted text –    Emotionally and physically I need help and don’t know where to get it.  Could this doctor be right?  Do I have no choices in my treatment? And what should I do? Hi Carrie You could do what thousands have done here in Australia, New Zealand, UK, Europe   Russia and now increasingly in the USA and that is try Buteyko therapy.  I have never yet heard of anyone for whom it has’nt worked.  The only problem for you is that since your asthma has a very substantial allergy component and since this component takes longer to treat than the bronchospasm component, you will have to work quite hard at it and make sure you get some sort of support. Unlike most other treatments, Buteyko therapy is based on solid basic physiology. So  I’m totally baffled as to why there is such a huge amount of opposition to it on this group. Incidentally, I have no commercial interest in Buteyo therapy or anyhting to  do with any treatments. Best wishes Peter Kolb Biomedical Engineer Carrie FREE INFORMATION ON BUTEYKO’S CURE FOR ASTHMA PROVIDED BY GRATEFUL EX-ASTHMATICS: http://www.wt.com.au/~pkolb/buteyko.htm

Response:

HI – I’ve been reading what you have been saying about having asthma and the BIG problems it causes.  Please try to hang in there.  You need to find a GOOD pulmonary specialist – one who can find the right formula that will control your asthma and alot of these guys will give you sample meds to try until the right ones are found for you.  If money is a problem, don’t hesitate to get financial help from whatever area you live in.  Your asthma will not go away and you can make it bearable if you learn how to treat it properly.  I have experienced some really negative problems myself.  I was dx’d when I was 35 for the first time and tried to ignore it.  It is not an easy illness to accept but once you have stopped breathing a time or two, it really lets you know that you must take control of it or it will take your life away from you.  I KNOW it is not easy (that’s an understatement) to watch your world get smaller due to your limitations and it is darn scary to know it can kill you but please try to accept that you have it & that you must deal with it.  I take 5 asthma meds now plus 2 meds for ARS (which is a result of taking my asthma meds).  Some days I can hardly stand to look at my mini-neb machine (I must use this 2xday) but when you consider the alternative, please believe that this is a small price to pay.  Some days are very good and some days are not so good.  Keep your chin up and find a good doc.  Having a good friend(s) to lean on for mental (& physical) support really helps too.   Don’t be afraid to verbalize about your feelings to your buddies.  It helps to talk about it.  Get going & get yourself on the road to feeling better.  Remember, you are important & you need to take care of yourself.  God Bless !! — Posted via Talkway – http://www.talkway.com Exchange ideas on practically anything ™.

Response:

Of course the fact that Buteyko has absolutely no scientific basis, and no clinical studies proving efficacy is irrelevant, right?

Chris Buteyko does work well in my experience – (I have cut my medication by 95% ) Yes, there has been one clinical trial with good results (as you know) and none contradicting this. There is scientific basis to Buteyko – for example it is established fact that hyperventilation can bring on an asthma attack . A recent paper from John Hopkins showed that a group of children who had been labelled EIA were in fact hyperventilating as shown by very low CO2 levels. It is probable that the method also works through a nitric oxide mechanism – asthmatics have higher levels of exhaled Nitric Oxide than non-asthmatics and  this is thought to be related to inflammation. When the breath is held after exhalation (as in Buteyko techniques) Nitric oxide builds to a plateau and may act by negative feedback to switch off inflammation. Janet

Response:

Chris Buteyko does work well in my experience – (I have cut my medication by 95% ) Yes, there has been one clinical trial with good results (as you know) and none contradicting this.

Incorrect. There is one trial that claims to have an effect on asthma. What you failed to mention is that the authors misrepresented the facts relating to the trial.  Since you are aware of this you are knowing presenting information that you know to be false. There is scientific basis to Buteyko – for example it is established fact that hyperventilation can bring on an asthma attack .

Again this is a misrepresentation of fact.  Acute hyperventilation can produce symptoms that mimic those of an asthma attack.  In addition there is no support for the theory of ‘chronic hyperventilation’ being a cause of asthma. Hyperventilation syndrome and asthma are two completely separate medical conditions.  You are aware of this.  Why do you persist in presenting information that you know to be false? "Usenet is like a herd of performing elephants with diarrhea — massive, diffucult to redirect, awe-inspiring, entertaining, and a source of mind boggling amounts of excrement when you least expect it." Gene Spafford 1992

Response:

"A recent paper from John Hopkins showed that a group of children who had been labeled EIA were in fact hyperventilating as shown by very low CO2 levels." Yet another example of "Buteykoists" misrepresenting research. This study found several things.     1) The vast majority of children diagnosed with EIA have the correct diagnosis. The study them focused on a small group who did not respond to medications as expected.     2) Of these, most were again confirmed to have EIA but were not adequately medicated.     3) Another group, in the small subset of kids unresponsive to medication, did not have asthma.     4) A small number of the kids diagnosed with EIA in the group that did not respond to meds and that did not have asthma were actually hyperventilating INSTEAD of having an asthma attack. This study did NOT find that hyperventilation is in any way shape or form connected to asthma other than the rare mistaken diagnosis. This paper in no way supports Buteyko theory. So why is it referenced in a post defending Buteyko ? You be the judge. — Good Luck, CBI, M.D. – Hide quoted text — Show quoted text – Of course the fact that Buteyko has absolutely no scientific basis, and no clinical studies proving efficacy is irrelevant, right? Chris Buteyko does work well in my experience – (I have cut my medication by 95% ) Yes, there has been one clinical trial with good results (as you know) and none contradicting this. There is scientific basis to Buteyko – for example it is established fact that hyperventilation can bring on an asthma attack . A recent paper from John Hopkins showed that a group of children who had been labelled EIA were in fact hyperventilating as shown by very low CO2 levels. It is probable that the method also works through a nitric oxide mechanism – asthmatics have higher levels of exhaled Nitric Oxide than non-asthmatics and  this is thought to be related to inflammation. When the breath is held after exhalation (as in Buteyko techniques) Nitric oxide builds to a plateau and may act by negative feedback to switch off inflammation. Janet

Response:

"It is probable that the method also works through a nitric oxide mechanism (1)- asthmatics have higher levels of exhaled Nitric Oxide than non-asthmatics (2) and  this is thought to be related to inflammation. (3) When the breath is held after exhalation (as in Buteyko techniques) Nitric oxide builds to a plateau and may act by negative feedback to switch off inflammation. (4)" (1) I thought it was probable that the method works through CO2. Does Buteyko know about this ? (2) Reference please. (3) Wouldn’t this support the inflammation theory of asthma ? Buteyko proposes that low CO2 levels cause asthma and that traditional medications aggravate asthma through allowing more hyperventilation, and hence, even lower CO2 levels. Now it would seem the story has changed. (4) Completely unproven speculation. — Good Luck, CBI, M.D.

Response:

Hi Carrie I’ve to add to Peter’s thoughts I’ve also heard that acupuncture can also work!

No, it doesn’t.  In controlled clinical trials it had no detectable effect at reducing asthma symptoms. Chris Owens

Response:

"It is probable that the method also works through a nitric oxide mechanism (1)- asthmatics have higher levels of exhaled Nitric Oxide than non-asthmatics (2) and  this is thought to be related to inflammation.

<snip Can you explain this nitric oxide excess to me? My cardiologist has prescribed taking L-arginine supplements to produce more nitric oxide for my heart condition.  Is it a different thing having higher levels of expired nitric oxide compared to levels in the blood?  Could this possibly make my asthma worse? Thank you, Shannon

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Dear Mr./Ms/Miss/Mrs Anonymous I’ve just come across this interesting collage of my quotes you have obviously spent a good deal of time collecting.  I did’nt think most of them were worth posting on a.s.a.  but it’s nice to know somebody else does.  Nice effort! Well done!  It’s good to know we even have anonymous people helping to spread the message on this absurd news group. However a few of the comments are a little out of context.  I can’t go over everything, but here is an example.  Lets start with the first one.     To be honest, Buteyko wasn’t a fat lot of use.

The way I recall it  Aidan had, at the time he wrote this, made a lot of progress on Buteyko therapy.  He was no longer taking any drugs and was well on his way to recovery when he decided to go an holiday to some place which was full of animals, all of which he had previously been allergic to.   He coped through the first night but by the second night he was already starting to feel the effect of this huge onslaught of allergens and his immune system simply could’nt cope with it.  This is seen occasionally even with Buteyko patients.  People on a standard asthma medication regime experience it all the time and are told to avoid anything with known allergens otherwise it’s one of those familar visits to the ER.   But Aidan just could’nt wait to put it to the test.  Having been able to re-unite with his own pets, he thought he was now completely over his asthma. Now when these incidents happen, when you are faced with a huge allergen challenge,   very often your immune system has not recovered sufficiently to cope with it and you need to take steroids to replace the deficit.  The good news is that every time this happens, Buteyko practitioners find that the amount of steroid required to overcome the attack is around about one third less than for the previous attack. By 18 months, if you have been doing your exercises,  You won’t be getting any more attacks at all.  The way I recall it, this was Aidan’s first post Buteyko attack and occurred a few months after he had stopped all medication.  I also recall that Aidan had an aversion to Steroid therapy and did not follow standard Buteyko protocol.  He also did it on  a DIY/self help basis, which is nowhere near as reliable as doing it with a practitioner. So you see, Mr./Ms/Miss/Mrs Anonymous,  while I have no doubt that your efforts to direct attention to Buteyko therapy were well intended,  a simple one-liner does not always reflect the full picture and can be misleading. "Our doctors in Austrlia kill an estimated 10,000 patients a year" Peter Kolb

Actually, it’s a lot worse than that.  The 10,000 patients that die every year in Australian hospitals are only those that die from preventable adverse events.  The total  killed by their doctors is a staggering 18,000. But it’s unfair to single out Australia.   In the United States 40,000 people a year die from bullet wounds. However, you are three times more likely to be killed by your doctor than you are by a bullet. This staggering fact comes from the well researched book by Lynne McTaggart:"What doctors don’t tell you" ISBN: 0 7225 3024 2. I’m really sorry you brought it up because this does’nt help asthmatics and is a subject doctors are very sensitive to.   There is little point in going on a doctor bashing exercise. I hope you’ll excuse me, but I really don’t have the time or patience to clarify all the other points quoted  out of context.. Best wishes and I hope you too are now athma free thanks to Buteyko therapy… Peter Kolb Biomedical Engineer FREE INFORMATION ON BUTEYKO’S CURE FOR ASTHMA PROVIDED BY GRATEFUL EX-ASTHMATICS:   http://www.wt.com.au/~pkolb/buteyko.htm

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Shannon, This is a very new research area, but , nitric oxide has been used for over 100 years for angina (although it was not formerly known that this was how angina treatments worked), with no deleterious effects on asthma. So it is unlikely that L-arginine which is an Nitric oxide precursor will have any effect on asthma either. Best wishes Janet

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Hi Carrie I’ve to add to Peter’s thoughts I’ve also heard that acupuncture can also work! No, it doesn’t.  In controlled clinical trials it had no detectable effect at reducing asthma symptoms.

Can you site the study that indicates this? I’d like to read it. ..diane

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In current textbooks hyperventilation is listed as a one of the triggers of asthma .

Yes, it can be. But it does not follow that chronic hyperventilation causes asthma. They are two different things. According to the local asthma nurse there are a lot of misdiagnosed asthmatics – Ventolin doesn’t work well and they end up on increasing doses of inhaled steroids which don’t help either – because they are in fact hyperventilating.

I’m not sure "a lot" is the appropriate term. It certainly does happen. I guess it depends on your definition of "a lot." A small percentage of misdiagnosed asthmatics are hyperventilating, as in panic attacks, not "chronic hyperventilation." This is far from the majority. Remember in this John Hopkins study they would have eliminated any one (prior to the study) who was not EIA according to their criteria.

No, they didn’t. Read it again. The criterion for entry was people who had been diagnosed as EIA and didn’t respond to appropriately to meds. Many of these kids were found to not have EIA or asthma. A few of these were hyperventilating. BTW the Buteyko method has brilliant extremely quick results when hyperventilation is the problem.

Unless Buteyko now also treats anxiety, there is no reason to theorize that this might be true. There certainly is no proof. Hyperventilating in this context refers to an anxiety driven, short term, event that was mistakenly identified as asthma but wasn’t. It has nothing to do with "chronic hyperventilation" causing asthma. These kids were having panic attacks related to athletic performance. Since they were determined to not be asthmatic referencing this article in a discussion on the "cure" for asthma is irrelevant. It is relevant only in demonstrating that if asthma does not respond as expected to treatment the diagnosis should be questioned. It supports no particular theory of causation or treatment. — Good Luck, CBI, M.D.

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CBI In answer to yours (2) there are dozens – eg:-Stirling RG, Thorax 1998 53 (12) 1030- 4                                             Barnes PJ, Immunology Today 1995 16(3) 128-130 (3) I don’t have any argument with the inflammation theory for asthma – it’s what causes the inflammation. (4) Yes it is speculation but there is some evidence in mild asthma Kacmarek RM Am J Respir Crit Care Med 1996 153 128 -35 BTW any chance of a discussion instead of a fight? Janet

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CBI I am not trying to misrepresent anything. In current textbooks hyperventilation is listed as a one of the triggers of asthma . According to the local asthma nurse there are a lot of misdiagnosed asthmatics – ventolin doesn’t work well and they end up on increasing doses of inhaled steroids which don’t help either – because they are in fact hyperventilating. I think it is a bigger problem than you think. Remember in this John Hopkins study they would have eliminated any one (prior to the study) who was not EIA according to their criteria. BTW the Buteyko method has brilliant extremely quick results when hyperventilation is the problem. Janet. – Hide quoted text — Show quoted text –

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Of course the fact that Buteyko has absolutely no scientific basis, and no clinical studies proving efficacy is irrelevant, right? Buteyko does work well in my experience – (I have cut my medication by 95% )

You DO understand the difference between a testamonial and evidence don’t you? Yes, there has been one clinical trial with good results (as you know)

No; there has been one clinical trial that falsely reported good results.  Their loss of blinding invalidates everything. There is scientific basis to Buteyko – for example it is established fact that hyperventilation can bring on an asthma attack .

No.  There is scientific evidence that panic reactions can cause exacerbation of asthma.  Further, that is not the equivalent of Buteyko’s theory that asthma is a result of chronic hyperventilation. A recent paper from John Hopkins showed that a group of children who had been labelled EIA were in fact hyperventilating as shown by very low CO2 levels.

And it quite clearly stated that these children had been MISDIAGNOSED. Chris Owens

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"Let me also assure you that Buteyko has nothing but contempt for western medicine and is not interested in appeasing anyone." ! The way I recall it "Aidan has had a huge set-back.  But he has not had the benefit of proper Buteyko tuition.  He has also chosen to take only that part which he likes.." Hello all, I had a difficult time at the weekend, when I went to stay with a friend on a farm in Bavaria. I arrived without a trace of asthma and also without my ventolin, which I don’t normally carry with me anymore – the last time I used it was when I visited my folks in England in May this year. I left gasping with asthma. Here’s the story. I noticed that the duvet on my guest bed had feathers in but I thought I’d risk it. The first night was fine, I slept like a log, so I assumed I’d cracked it – feathers are normally one of the worst allergens for me. The second night I woke a little early wheezing but seemed to more or less bring it under control with a bit of Buteyko. Whereas the first day had been mostly spent visiting a nearby town, during the second day we spent some time in the farmhouse kitchen – with a cat. My asthma deteriorated during the second day, worsened by a visit to a nearby riding stable (horses, another allergen, if lesser than the others). Despite determined attempts to use Buteyko, I lost it from this point. The third night was impossible, 4 hours wheezy sleep and severe disabling attacks with sneezing and the whole works. I had to leave early the next morning – either that or go to the emergency doctor and get dosed up with god knows what. Only now, 24 hours after leaving the farm, do I feel like it’s really getting better. So that’s the usual "biological inhalant sensitivities" that John Mansfield identifies that laid me low, despite being asthma-free on arrival and despite avoiding my key food allergens during my stay (i.e. wheat and dairy products):    - feathers    - cats    - horses    - house-dust mites (the mattress and carpet were almost certainly                        full of these) Does anybody else suffer a similar "away from home" syndrome? It makes visiting people difficult. It’s all the more discouraging because I’ve normally got the symptoms so well under control in my day-to-day life. To be honest, Buteyko wasn’t a fat lot of use. My control pause plummeted to 10 seconds or less (was around the usual 30-45 secs on arrival). I could only crank it up to around 15 seconds but the effect seemed to only last a few minutes. Any support appreciated, particularly experience with neutralization against specific allergens such as the ones listed above. I now have my doubts that Buteyko can really help protectively in the face of such a determined onslaught. ! I’m really sorry you brought it up because this does’nt help ! asthmatics and is a subject doctors are very sensitive to. ! There is little point in going on a doctor bashing exercise. "I have had a private concern raised that we’re heading to be just a doctor bashing group.  For those who are concerned, please don’t worry, this is a temporary but inevitable diversion." "As long as the community has this illusion that medicine is somehow "scientific", it will remain happy to abregate it’s health care responsibilities to this select group of people." "The peer review process is not an infallible system. It’s effectiveness is continually threatened by conflicts between personalities, rivalries, jealousies and vested interests." "As far as I know the trials were never actually published. From what I can gather,  it looks pretty much like a conspiracy, with the two doctors setting out to destroy the "Buteyko myth" once and for all." "When the sh_t does eventually hit the fan and modern medicine is forced to back down over Buteyko, this fiasco must be used as a weapon to force change onto the medical culture." "I read in one of the newspaper articles (on our web site) that Doctors in Russia are nominating Buteyko for a Nobel Prize in medicine." ! I hope you’ll excuse me, but I really don’t have the time or patience ! to clarify all the other points quoted out of context.. ! ! I have never yet heard of anyone for whom it has’nt worked. "If whatever we present on the page does’nt work for someone, we have no way of providing back-up.  It is an essential element of Buteyko practice to have follow-up expertise available when you need it." JLS "Eventually my breathing seemed to get worse when doing the exercises (which my teacher warned of) and I dropped the practice." "I’m sorry to hear that you dropped practicing Buteyko breathing." Susan Despite 2 years of Buteyko, my allergies have not improved and I never go to anyone’s house without my inhaler because of similar circumstances as yours. I practiced Buteyko as diligently as I was able for 1 year according to the Stark and original Russian protocol, and derived very little actual benefit overall.  I was never able to reduce any of my medications. Buteyko did give me the illusion that I was able to exercise when I was in fact very ill, and I subsequently crashed with CFS caused by mercury poisoning and became unable to support myself. BTW at that point I really *did* develop a cortisol deficit. ! I practiced Buteyko as diligently as I was able for 1 year according ! to the Stark and original Russian protocol, and derived very little ! actual benefit overall. Yes, Patty, I agree that you have had a difficult time with Buteyko, and I have no doubt that your analysis on Mercury poisoning is correct.  But I think you are a very rare exception and the overwhelming majority of asthmatics who have an asthma problem can heal themselves with Buteyko therapy. ! The original discussion had nothing to do with whether or not someone ! was practicing the correct technique. It really makes me rub my ! temples in frustration when Buteyko advocates hide behind questions or ! criticism with the argument "If it is not working for you, you are ! doing it wrong." Patty,  the point I was trying to make, and which I obviously made very badly, was that Buteyko treatment is very hard to sustain. You are undoubtedly right.  There will be asthmatics with other problems as your case has revealed.  And no amount of Buteyko breathing alone will get rid of your asthma.  These other problems too have to be attended to. And I dare say that adults with a long history of asthma may never get their immune system working properly again. ! ! So  I’m totally baffled as to why there is such a huge ! ! amount of opposition to it on this group. "I find this hostility from patients, from doctors and now even from Buteyko therapists quite unbelievable." "I’ve noticed that most of the critics of Buteyko are speed readers. They read every 4th word and then think they know it all." "You make far more keeping people enslaved to drugs over which you have control." "That’s why it never ceases to amaze me how people on this group who are looking for an alternative, keep getting fopped off with the gratuitous advice: "SEE YOUR DOCTOR"." "Nobody who has enough intelligence to put up a poster on the ASA needs to be told by a stranger that he should see a doctor.   I would find that kind of advice offensive and patronising." "He’s an empty vessel that makes a lot of noise and that’s what seems to impress. And that’s exactly why he gives me the sh*ts!" "You get these bigots everywhere.  It’s just a shame that others might be put off by ignorant comments like these." "There’s really nothing you can do about bigotry: they don’t respond to reason." "Finally,  I really want to say a big thanks to Robert and all those people who are presenting their experience with Buteyko on alt.support.asthma. It is’nt easy when you just keep getting your head kicked by bigots." "I make a point of not replying to all your uninformed drivvel." "Perhaps I could suggest, Richard, that you as director of this operation, redirect his mail to alt.support.asthma where it would substantially raise the intellectual level of discussion." "You’ve been writing stupid letters for over a year now.  If you’d only put one tenth of the effort you have put into writing these letters, into trying Butyeko therapy, you too would be without asthma today. Then you could be using your time more productively, helping others get over their asthma instead of running the mindless, bigoted, totally negative campaign we’ve come to expect from you." On the other hand, I understand that there have been a few scares here in Australia. I’m not certain of the details, but I believe there may even have been an asthma death for which the Maximum Pause has been blamed. Whatever the incident was, … read more »

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Question:

- Hide quoted text — Show quoted text – About a month ago, I had what I have been told was my first asthma attack.  I’m 47 and never had this before.  I have always had severe allergies, but I haven’t had asthma.  The past few years, I have had pneumonia once and quite a few bouts with bronchitis.  I was taken from the doctor’s office in respiratory failure, after 3 unsuccessful nebulizer treatments(I don’t remember the ride) and have been given prednisone, albuterol, clariden and nasacort.  I don’t seem to have the wheezing that I hear is distinctive in asthma, except when I have bronchitis.  I do get a very strong tightness in my chest, which feels like is is hard to suck in air. Peak flow goes down to 2 or 3. I have in hindsight, recalled that (in the past five years or so, I always seemed to be out of breath, even just walking down a long hallway. This I have attributed to the fact that I’m overweight and/or that it is hot and humid and everybody complains about how heavy the air is.  I just find it hard to believe that at my age I can just get asthma overnight. The pump seems to help most of the time, but sometimes it seems like days before I feel more relaxed breathing.  Does anyone think that it’s possible that I raelly don’t have asthma?  After all, I don’t wheeze. Any responses are really appreciated.

Quite often asthma is diagnosed just based on a person’s medical history.  It is often possible to get good confirmation by doing a before and after bronchodilator pulmonary function test.  Do you know if this was done in your case?   Sometimes people will not have wheezing.  If the bronchial tubes are narrowed enough not enough air can flow through them to make the wheezing sounds.  It sometimes happens that when listening to someone with a severe asthma attach that you hear very little sound at all and then after a few bronchodilator treatments you do start to hear breath sound including wheezes.  You may not notice them, but someone could har them with a stethoscope. Do you see an allergist or pulmonary specialist or just an internal medicine physician?   Bill

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   Janet,       I, too, never experienced an asthma attack until I was 35. I am now 56 and take daily medication to keep my asthma under control.  Until my first asthma attack I always suspected that I had allergies. I agree with a previous respondent that you should educate yourself about the illness and maybe accept the fact that the it may be chronic. I discovered that the more you know about your illness the more help you can be to your phyician in helping him or her treat it.      Good luck,          Jack

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Hi, please see my response to subject "I NEED HELP.."  Good luck, joe

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About a month ago, I had what I have been told was my first asthma attack.  I’m 47 and never had this before.  I have always had severe allergies, but I haven’t had asthma.  The past few years, I have had pneumonia once and quite a few bouts with bronchitis.  I was taken from the doctor’s office in respiratory failure, after 3 unsuccessful nebulizer treatments(I don’t remember the ride) and have been given prednisone, albuterol, clariden and nasacort.  I don’t seem to have the wheezing that I hear is distinctive in asthma, except when I have bronchitis.  I do get a very strong tightness in my chest, which feels like is is hard to suck in air. Peak flow goes down to 2 or 3. I have in hindsight, recalled that (in the past five years or so, I always seemed to be out of breath, even just walking down a long hallway. This I have attributed to the fact that I’m overweight and/or that it is hot and humid and everybody complains about how heavy the air is.  I just find it hard to believe that at my age I can just get asthma overnight. The pump seems to help most of the time, but sometimes it seems like days before I feel more relaxed breathing.  Does anyone think that it’s possible that I raelly don’t have asthma?  After all, I don’t wheeze.   Any responses are really appreciated.

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I dont know whether you have asthma or not but I would keep in mind that you paid a professional to diagnose your condition and that this person has stated that you do. Asthma comes in a lot of varieties,i.e., intrinsic, extrinsic, occupational, etc. and they have different symptoms that are difficult sometimes to quantify. What I will say is that you should keep an open mind that it’s possible to have this disease and that this disease, according to some numbers I’ve heard, kills twelve times the number of people that die by fire in this country. The really sad part is that asthma doesn’t discriminate and a lot of those deaths are children of ignorant parents who don’t want to believe that there child could be a (God forbid) "Wheezer". Do yourself a favor and obtain some facts. Dont be afraid to ask your physician questions or request a consult with a pulmonologist or allergist. Its your life, take responsibility for it unless you want to be a victim. Reagrds, Dennis A. Nolen

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About a month ago, I had what I have been told was my first asthma attack.  I’m 47 and never had this before.  I have always had severe allergies, but I haven’t had asthma.  The past few years, I have had pneumonia once and quite a few bouts with bronchitis.  I was taken from the doctor’s office in respiratory failure, after 3 unsuccessful nebulizer treatments(I don’t remember the ride) and have been given prednisone, albuterol, clariden and nasacort.  I don’t seem to have the wheezing that I hear is distinctive in asthma, except when I have bronchitis.  I do get a very strong tightness in my chest, which feels like is is hard to suck in air. I have attributed to the fact that I’m overweight and/or that it is hot and humid and everybody complains about how heavy the air is.  I just find it hard to believe that at my age I can just get asthma overnight. ….After all, I don’t wheeze.  

I had a very similar history.  My symptoms began at age 39–two years ago–and they haven’t let up since.  In fact, I had an acute bronchitis around Memorial Day and I’m still having mild shortness of breath from it.  I don’t wheeze either, except when I have a real bad coughing fit–I typically get these with sinusitis, which I get often. After two years of suffering like this, I was diagnosed with adult-onset asthma. Can you "get asthma overnight"?  I think it’s important to distinguish between the acute symptoms of asthma and the underlying inflammation. The underlying inflammation may be getting worse, but until something triggers an acute attack (which can occur instantly), you may not be aware of it.  In my case, looking back over my life, I can remember various indications of a mild persistent underlying inflammation (mild shortness of breath on days with peak heat and humidity; dry cough after a cold that lasted for months; etc.).  But what really finally set off true asthma attacks was a bad acute sinusitis episode in October 1993.  I’ve had asthma ever since.  :-) — Steven D. Litvintchouk                  "There seems to be no mainframe Disclaimer:  As far as I am aware,       in which we’re living." the opinions expressed herein                 — President Bill Clinton are not those of my employer.

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