Guest guest Posted March 11, 2007 Report Share Posted March 11, 2007 Addy, I'm so sorry you're having such a miserable time and hope you feel better soon. Do you have any nasal saline around? Irrigating your sinuses to wash out the offending allergen/irritant might turn things around more quickly. Although many folks, including a lot of docs who are not up-to-date, will say authoritatively that a reaction to a chemical " is a sensitivity, not an allergy " , it simply ain't necessarily so. The key is whether the reaction involves IgE or not. If IgE is involved, it binds to the " chemical " just like any classic allergen (mold, pollen etc.) and the IgE-chemical complex binds to mast cells to trigger a classic " allergic " reaction. Much of the erroneous thinking comes from an old, now outdated, understanding that only proteins could react with IgE so that non- protein molecules must have their effect by some other route that is not true allergy. Now we know that many non-protein chemicals (even steroids, as I've mentioned in another post) can cause IgE mediated reactions that are no different from any protein-triggered allergic reaction. In these cases, the reaction to the non-protein chemical is a true allergy. However, many many many docs, including relatively young ones who were trained recently, are unaware of this information and they will firmly tell you that your " chemical " -triggered allergic- type symptoms from an odor, for example, are due to " a sensitivity, not an allergy " . But your intuitive sense that " walks like a duck, quacks like a duck... " may well be correct - in these situations, you may really be having a true allergic reaction after all. Having said all that, there are many chemicals that provoke sensitivies that are not IgE-mediated but instead have different pathways to misery. In these cases, the reactions are properly said to be due to sensitivities (technically speaking, hypersensitivities) rather than allergy. Some of these reactions include difficulty breathing with or without wheezing, nasal irritation/itching/ congestion and runny nose, which so many of us experience as allergic symptoms. So the symptoms don't define the reaction as allergy vs. sensitivity, only the presence or absence of the IgE-mediated pathway does. Fran > > OK - I've read and been told that one cannot be allergic to chemicals, > just " sensitive. " I don't care, my reactions are the same regardless - > potato, potahto. > > Today I went with a friend and her daughter to discovery day for North > Carolina School of Science and Math, a public residential high school > for gifted and talented students in NC. I used to work there. When I > worked there, I avoided the science wing entirely. We had a tour today > and ended up in the chem lab. While there was no one there, they had > stuff " happening, " including recycling used cooking oil from the campus > kitchen into deisel gas for the vans. An excellent practice. However, > my sinuses started burning within minutes and now, hours later at home, > I am MISERABLE. I mean, if I could slice off my face with a kitchen > knife, I might just consider it. > > Addy > Group co-owner > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2007 Report Share Posted March 11, 2007 Thank you, Fran. I feel very vindicated reading your post. Since it is the end of my Xolair dosing period, I expect I am having some Ige response. " different pathways to misery " is truly an apt phrase. I make my own nasal rinse from a recipe I got from National Jewish. I think and/or use it too. The first thing I did when I came home was to rinse. About 15 minutes of nose blowing later I took my rhinocort (ENT says I can double the dose when necessary) and 20mg pred and used my steroid inhaler to try to prevent any inflammation from traveling to my lungs. While I am feeling no better, the progression so far has leveled off, so I'm cautiously optimistic that maybe I've reached the max for this time. Anyway, your advice on rinsing is well taken. I'll rinse again before bed in case some of the inflammation has gone down and I can get some more stuff out. Addy perpetually irritated by irritants of all kinds > > > > OK - I've read and been told that one cannot be allergic to > chemicals, > > just " sensitive. " I don't care, my reactions are the same > regardless - > > potato, potahto. > > > > Today I went with a friend and her daughter to discovery day for > North > > Carolina School of Science and Math, a public residential high > school > > for gifted and talented students in NC. I used to work there. > When I > > worked there, I avoided the science wing entirely. We had a tour > today > > and ended up in the chem lab. While there was no one there, they > had > > stuff " happening, " including recycling used cooking oil from the > campus > > kitchen into deisel gas for the vans. An excellent practice. > However, > > my sinuses started burning within minutes and now, hours later at > home, > > I am MISERABLE. I mean, if I could slice off my face with a > kitchen > > knife, I might just consider it. > > > > Addy > > Group co-owner > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2007 Report Share Posted March 11, 2007 Addy, I also LOVE Astelin for abrupt or long-standing nasal allergy. It puts a ton of antihistamine right where the action is and usually works very quickly for me. I don't take it on a routine basis but always have a sample-sized bottle in my purse for when I need it. Feel better soon. Fran > > > > > > OK - I've read and been told that one cannot be allergic to > > chemicals, > > > just " sensitive. " I don't care, my reactions are the same > > regardless - > > > potato, potahto. > > > > > > Today I went with a friend and her daughter to discovery day for > > North > > > Carolina School of Science and Math, a public residential high > > school > > > for gifted and talented students in NC. I used to work there. > > When I > > > worked there, I avoided the science wing entirely. We had a tour > > today > > > and ended up in the chem lab. While there was no one there, they > > had > > > stuff " happening, " including recycling used cooking oil from the > > campus > > > kitchen into deisel gas for the vans. An excellent practice. > > However, > > > my sinuses started burning within minutes and now, hours later at > > home, > > > I am MISERABLE. I mean, if I could slice off my face with a > > kitchen > > > knife, I might just consider it. > > > > > > Addy > > > Group co-owner > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2007 Report Share Posted March 11, 2007 Addy - speaking of irritants (other than my wife), smoke gives me fits and brings on or exacerbates my problems. Oddly enough, my allergy tests did not reveal I am terribly allergic to anything. However, my Ige tipped in at over 900. This was after three sinus surgeries, the third one of which was at Duke, where they said I'd probably never be cured. At that time, I had mold infection, other infections and MRSA all going at the same time in my sinuses. With a sinus D & C and a ton of antibiotics infused over 6 weeks, they got rid of all the infections, but the symptoms did not disappear. A few weeks later, the MRSA cropped up in my leg. More antibiotics to fix my leg. Then they jam some needles through my skull to get pure samples - No MRSA, but I've got infections again. More big doses of antibiotics, followed by lots of prednisone. Then infectious disease guy turns me over to pulm. dude who stops prednisone and puts me on xolair, for which he says I'm a perfect candidate. However, my ENT doc says it's not my allergies as much as it is chronic sinusitis, and he thinks I maybe should be seeing a rheumatologist. My primary care doc puts me back on prednisone (8 mg per day) to stabilize me and prevent xolair reactions or whatever. Sheeeeesh!! My point in reiterating all this is that even though my Ige was down in the 300 range before going on xolair, I was still screwed up, but no one is sure why. Personally, I'm inclined to believe there's a whole lot more they don't know about allergies and asthma than they do know. I outgrew my allergies and asthma and was free of problems probably for 20 or more years. Then the allergies returned, which somehow brought about the sinusitis, which became far worse than the allergies and led to a return of asthma in the past two years. I subscribe to the ENT/chronic sinusitis theory because prednisone is so effective in my case. But if chronic sinusitis is the problem, why does xolair seem to be helping - even tho pulmo doc says he won't believe I'm getting any beneficial results until after I've been on xolair at least a year. ly, I think the whole problematic situation is brought about by demons and gremlins, and probably a few aliens. Terry ----- Original Message ----- From: pyle456 Sent: Saturday, March 10, 2007 7:32 PM Subject: [ ] chemical sensitivity vs allergy OK - I've read and been told that one cannot be allergic to chemicals, just " sensitive. " I don't care, my reactions are the same regardless - potato, potahto. Today I went with a friend and her daughter to discovery day for North Carolina School of Science and Math, a public residential high school for gifted and talented students in NC. I used to work there. When I worked there, I avoided the science wing entirely. We had a tour today and ended up in the chem lab. While there was no one there, they had stuff " happening, " including recycling used cooking oil from the campus kitchen into deisel gas for the vans. An excellent practice. However, my sinuses started burning within minutes and now, hours later at home, I am MISERABLE. I mean, if I could slice off my face with a kitchen knife, I might just consider it. Addy Group co-owner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2007 Report Share Posted March 11, 2007 Wow - I couldn't have said that better myself. Echoing (sort of) what Fran suggests, I wouldn't be without my twice daily flushes. The dox at Duke got me hooked on them, and said I'd probably have to (or should) continue them the rest of my life. They gave (yeah, right!) me an eight-ounce Neil-Med squeeze bottle ($15 at drug stores), and told me to flush several times a day. Half a teaspoon of canning salt (no iodine - 4 lbs. for $1) in eight ounces of warm water squeezed up my nose does wonders. If I forget, my sinuses remind me by returning the sinus headaches. Everyone should try this simple treatment - it flushes the cruddies out and it really helps. Terry a.k.a. ohldepharte ----- Original Message ----- From: tiredofsteroids Sent: Saturday, March 10, 2007 8:44 PM Subject: [ ] Re: chemical sensitivity vs allergy Addy, I'm so sorry you're having such a miserable time and hope you feel better soon. Do you have any nasal saline around? Irrigating your sinuses to wash out the offending allergen/irritant might turn things around more quickly. Although many folks, including a lot of docs who are not up-to-date, will say authoritatively that a reaction to a chemical " is a sensitivity, not an allergy " , it simply ain't necessarily so. The key is whether the reaction involves IgE or not. If IgE is involved, it binds to the " chemical " just like any classic allergen (mold, pollen etc.) and the IgE-chemical complex binds to mast cells to trigger a classic " allergic " reaction. Much of the erroneous thinking comes from an old, now outdated, understanding that only proteins could react with IgE so that non- protein molecules must have their effect by some other route that is not true allergy. Now we know that many non-protein chemicals (even steroids, as I've mentioned in another post) can cause IgE mediated reactions that are no different from any protein-triggered allergic reaction. In these cases, the reaction to the non-protein chemical is a true allergy. However, many many many docs, including relatively young ones who were trained recently, are unaware of this information and they will firmly tell you that your " chemical " -triggered allergic- type symptoms from an odor, for example, are due to " a sensitivity, not an allergy " . But your intuitive sense that " walks like a duck, quacks like a duck... " may well be correct - in these situations, you may really be having a true allergic reaction after all. Having said all that, there are many chemicals that provoke sensitivies that are not IgE-mediated but instead have different pathways to misery. In these cases, the reactions are properly said to be due to sensitivities (technically speaking, hypersensitivities) rather than allergy. Some of these reactions include difficulty breathing with or without wheezing, nasal irritation/itching/ congestion and runny nose, which so many of us experience as allergic symptoms. So the symptoms don't define the reaction as allergy vs. sensitivity, only the presence or absence of the IgE-mediated pathway does. Fran > > OK - I've read and been told that one cannot be allergic to chemicals, > just " sensitive. " I don't care, my reactions are the same regardless - > potato, potahto. > > Today I went with a friend and her daughter to discovery day for North > Carolina School of Science and Math, a public residential high school > for gifted and talented students in NC. I used to work there. When I > worked there, I avoided the science wing entirely. We had a tour today > and ended up in the chem lab. While there was no one there, they had > stuff " happening, " including recycling used cooking oil from the campus > kitchen into deisel gas for the vans. An excellent practice. However, > my sinuses started burning within minutes and now, hours later at home, > I am MISERABLE. I mean, if I could slice off my face with a kitchen > knife, I might just consider it. > > Addy > Group co-owner > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2007 Report Share Posted March 12, 2007 Terry, have you had an immunological workup? You sound a lot like I was until I was diagnosed with a form of Adult Variable Immune Deficiency with an IgG subclass deficiency. I was then treated for several years with intravenous immunoglubulin (=antibodies) monthly with tremendous improvement. There are also other forms of immune deficiency that can underlie problems like yours. If you haven't had a workup specifically by an immunologist, it would be worth your while to get referred to one at Duke. Allergists are board certified in Allergy and Immunology but you would want to see someone whose entire practice is immunology. Those folks are rarely out in the community, almost always only at major university medical centers. Fran --- In , " Terry " <onabeach@...> wrote: > > Addy - speaking of irritants (other than my wife), smoke > gives me fits and brings on or exacerbates my problems. > > Oddly enough, my allergy tests did not reveal I am terribly > allergic to anything. However, my Ige tipped in at over 900. > This was after three sinus surgeries, the third one of which > was at Duke, where they said I'd probably never be cured. > At that time, I had mold infection, other infections and > MRSA all going at the same time in my sinuses. With a > sinus D & C and a ton of antibiotics infused over 6 weeks, > they got rid of all the infections, but the symptoms did not > disappear. A few weeks later, the MRSA cropped up in my leg. > More antibiotics to fix my leg. > Then they jam some needles through my skull to get pure > samples - No MRSA, but I've got infections again. More big > doses of antibiotics, followed by lots of prednisone. Then > infectious disease guy turns me over to pulm. dude who > stops prednisone and puts me on xolair, for which he says I'm > a perfect candidate. However, my ENT doc says it's not my > allergies as much as it is chronic sinusitis, and he thinks I > maybe should be seeing a rheumatologist. My primary care > doc puts me back on prednisone (8 mg per day) to stabilize > me and prevent xolair reactions or whatever. Sheeeeesh!! > > My point in reiterating all this is that even though my Ige was > down in the 300 range before going on xolair, I was still screwed > up, but no one is sure why. Personally, I'm inclined to believe > there's a whole lot more they don't know about allergies and > asthma than they do know. I outgrew my allergies and asthma > and was free of problems probably for 20 or more years. Then > the allergies returned, which somehow brought about the sinusitis, > which became far worse than the allergies and led to a return of > asthma in the past two years. I subscribe to the ENT/chronic > sinusitis theory because prednisone is so effective in my case. > But if chronic sinusitis is the problem, why does xolair seem to > be helping - even tho pulmo doc says he won't believe I'm getting > any beneficial results until after I've been on xolair at least a year. > > ly, I think the whole problematic situation is brought about > by demons and gremlins, and probably a few aliens. > > Terry > > ----- Original Message ----- > From: pyle456 > > Sent: Saturday, March 10, 2007 7:32 PM > Subject: [ ] chemical sensitivity vs allergy > > > OK - I've read and been told that one cannot be allergic to chemicals, > just " sensitive. " I don't care, my reactions are the same regardless - > potato, potahto. > > Today I went with a friend and her daughter to discovery day for North > Carolina School of Science and Math, a public residential high school > for gifted and talented students in NC. I used to work there. When I > worked there, I avoided the science wing entirely. We had a tour today > and ended up in the chem lab. While there was no one there, they had > stuff " happening, " including recycling used cooking oil from the campus > kitchen into deisel gas for the vans. An excellent practice. However, > my sinuses started burning within minutes and now, hours later at home, > I am MISERABLE. I mean, if I could slice off my face with a kitchen > knife, I might just consider it. > > Addy > Group co-owner > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2007 Report Share Posted March 12, 2007 Fran - thanx for the advice. I had some form of immunological testing - I had contended I had low resistance because seldom does a cold or flu contact come by that I don't get infected. They tell me the results are within normal parameters. I have no comprehension of the nature of the test or ability to interpret the results (which I have a copy of), but I think all they did was extract some blood and test it. I seem to recall something about white cells, but that's about all. Does an infectious disease control doc count toward immunology? I've been seeing a dandy one - Harvard Med School and all that. It's a fair piece to Duke - about 150 miles each way, which makes for a hellofa long day. Terry ----- Original Message ----- From: tiredofsteroids Sent: Sunday, March 11, 2007 9:23 PM Subject: [ ] Re: chemical sensitivity vs allergy Terry, have you had an immunological workup? You sound a lot like I was until I was diagnosed with a form of Adult Variable Immune Deficiency with an IgG subclass deficiency. I was then treated for several years with intravenous immunoglubulin (=antibodies) monthly with tremendous improvement. There are also other forms of immune deficiency that can underlie problems like yours. If you haven't had a workup specifically by an immunologist, it would be worth your while to get referred to one at Duke. Allergists are board certified in Allergy and Immunology but you would want to see someone whose entire practice is immunology. Those folks are rarely out in the community, almost always only at major university medical centers. Fran > > Addy - speaking of irritants (other than my wife), smoke > gives me fits and brings on or exacerbates my problems. > > Oddly enough, my allergy tests did not reveal I am terribly > allergic to anything. However, my Ige tipped in at over 900. > This was after three sinus surgeries, the third one of which > was at Duke, where they said I'd probably never be cured. > At that time, I had mold infection, other infections and > MRSA all going at the same time in my sinuses. With a > sinus D & C and a ton of antibiotics infused over 6 weeks, > they got rid of all the infections, but the symptoms did not > disappear. A few weeks later, the MRSA cropped up in my leg. > More antibiotics to fix my leg. > Then they jam some needles through my skull to get pure > samples - No MRSA, but I've got infections again. More big > doses of antibiotics, followed by lots of prednisone. Then > infectious disease guy turns me over to pulm. dude who > stops prednisone and puts me on xolair, for which he says I'm > a perfect candidate. However, my ENT doc says it's not my > allergies as much as it is chronic sinusitis, and he thinks I > maybe should be seeing a rheumatologist. My primary care > doc puts me back on prednisone (8 mg per day) to stabilize > me and prevent xolair reactions or whatever. Sheeeeesh!! > > My point in reiterating all this is that even though my Ige was > down in the 300 range before going on xolair, I was still screwed > up, but no one is sure why. Personally, I'm inclined to believe > there's a whole lot more they don't know about allergies and > asthma than they do know. I outgrew my allergies and asthma > and was free of problems probably for 20 or more years. Then > the allergies returned, which somehow brought about the sinusitis, > which became far worse than the allergies and led to a return of > asthma in the past two years. I subscribe to the ENT/chronic > sinusitis theory because prednisone is so effective in my case. > But if chronic sinusitis is the problem, why does xolair seem to > be helping - even tho pulmo doc says he won't believe I'm getting > any beneficial results until after I've been on xolair at least a year. > > ly, I think the whole problematic situation is brought about > by demons and gremlins, and probably a few aliens. > > Terry > > ----- Original Message ----- > From: pyle456 > > Sent: Saturday, March 10, 2007 7:32 PM > Subject: [ ] chemical sensitivity vs allergy > > > OK - I've read and been told that one cannot be allergic to chemicals, > just " sensitive. " I don't care, my reactions are the same regardless - > potato, potahto. > > Today I went with a friend and her daughter to discovery day for North > Carolina School of Science and Math, a public residential high school > for gifted and talented students in NC. I used to work there. When I > worked there, I avoided the science wing entirely. We had a tour today > and ended up in the chem lab. While there was no one there, they had > stuff " happening, " including recycling used cooking oil from the campus > kitchen into deisel gas for the vans. An excellent practice. However, > my sinuses started burning within minutes and now, hours later at home, > I am MISERABLE. I mean, if I could slice off my face with a kitchen > knife, I might just consider it. > > Addy > Group co-owner > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 It sounds like you just had a preliminary workup, probably just basic antibody levels (immunogloblulins, abbreviated in lab reports as IgA, IgG, IgM, IgD and possibly IgG subclasses). Immunologists (but not infectious disease specialists) do much more extensive testing that includes studying the function of actual immune cells that are in your blood. Studies like this are best done by taking a patient's blood and immediately separating out those cells and putting them immediately into the appropriate culture conditions for the functional testing, rather than taking blood and sending it away to a distant lab. I learned as a patient, and then again later as a physician, that the best way to get a comprehensive immunological workup for someone who has been as ill as you have for as long as you have is for the patient to go to the immunologist. I think you would find it very worth your while to find a day to do that at Duke if you can work it out. Fran > > > > Addy - speaking of irritants (other than my wife), smoke > > gives me fits and brings on or exacerbates my problems. > > > > Oddly enough, my allergy tests did not reveal I am terribly > > allergic to anything. However, my Ige tipped in at over 900. > > This was after three sinus surgeries, the third one of which > > was at Duke, where they said I'd probably never be cured. > > At that time, I had mold infection, other infections and > > MRSA all going at the same time in my sinuses. With a > > sinus D & C and a ton of antibiotics infused over 6 weeks, > > they got rid of all the infections, but the symptoms did not > > disappear. A few weeks later, the MRSA cropped up in my leg. > > More antibiotics to fix my leg. > > Then they jam some needles through my skull to get pure > > samples - No MRSA, but I've got infections again. More big > > doses of antibiotics, followed by lots of prednisone. Then > > infectious disease guy turns me over to pulm. dude who > > stops prednisone and puts me on xolair, for which he says I'm > > a perfect candidate. However, my ENT doc says it's not my > > allergies as much as it is chronic sinusitis, and he thinks I > > maybe should be seeing a rheumatologist. My primary care > > doc puts me back on prednisone (8 mg per day) to stabilize > > me and prevent xolair reactions or whatever. Sheeeeesh!! > > > > My point in reiterating all this is that even though my Ige was > > down in the 300 range before going on xolair, I was still screwed > > up, but no one is sure why. Personally, I'm inclined to believe > > there's a whole lot more they don't know about allergies and > > asthma than they do know. I outgrew my allergies and asthma > > and was free of problems probably for 20 or more years. Then > > the allergies returned, which somehow brought about the sinusitis, > > which became far worse than the allergies and led to a return of > > asthma in the past two years. I subscribe to the ENT/chronic > > sinusitis theory because prednisone is so effective in my case. > > But if chronic sinusitis is the problem, why does xolair seem to > > be helping - even tho pulmo doc says he won't believe I'm getting > > any beneficial results until after I've been on xolair at least a > year. > > > > ly, I think the whole problematic situation is brought about > > by demons and gremlins, and probably a few aliens. > > > > Terry > > > > ----- Original Message ----- > > From: pyle456 > > > > Sent: Saturday, March 10, 2007 7:32 PM > > Subject: [ ] chemical sensitivity vs allergy > > > > > > OK - I've read and been told that one cannot be allergic to > chemicals, > > just " sensitive. " I don't care, my reactions are the same > regardless - > > potato, potahto. > > > > Today I went with a friend and her daughter to discovery day for > North > > Carolina School of Science and Math, a public residential high > school > > for gifted and talented students in NC. I used to work there. > When I > > worked there, I avoided the science wing entirely. We had a tour > today > > and ended up in the chem lab. While there was no one there, they > had > > stuff " happening, " including recycling used cooking oil from the > campus > > kitchen into deisel gas for the vans. An excellent practice. > However, > > my sinuses started burning within minutes and now, hours later at > home, > > I am MISERABLE. I mean, if I could slice off my face with a > kitchen > > knife, I might just consider it. > > > > Addy > > Group co-owner > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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