Guest guest Posted September 20, 2000 Report Share Posted September 20, 2000 IT is below on the purple undersign of health@... . Go for it.. Kathy AUTISM (etc.) FROM VACCINES. >> >> >>> >>>REFERENCE: EMAIL from KBLANCO@...; 19 September 2000 to The >>>Editors and Kathleen M. Heins of Better Homes and Gardens: >>> >>> >>>I am the father of kblanco@..., and grandparent of the two out >>>of four children of same kblanco@...., who have severe >>>Retardation, Autism, and other Health Issues resulting from Vaccination >>>Damages while they were young children. >>> >>>I previously HAD been on your side, strongly favoring vaccinations of >>>children, and recall telling my daughter about a statement made by one of >>>my College Professors, Dr. Sargent, that " Parents who Do Not Have their >>>children Vaccinated, should have their children taken away " . That >>>statement by Dr. Sargent was about 1949-1950, and I carried it as part of >>>my philosophy until very recently. >>> >>>Sadly, there IS ANOTHER SIDE, and one ignored by your article on >>>vaccinations. I think my daughters EMAIL covers the subject quite well, >>>but recognize that that EMAIL was too lengthy. You people probably >>>won't even read it? >>> >>>BUT PUT YOURSELF IN HER SHOES. If you had 50% of your children damaged >>>by the Vaccinations you espouse, would you have published the article in >>>Better Homes and Gardens? >>> >>>BE HONEST! DO SOME HONEST RESEARCH, & PUBLISH THE TRUTH, OR IN CASE OF >>>A CONTROVERSAL SUBJECT, AS THIS MAY BE, AT LEAST TELL BOTH SIDES. TO DO >>>OTHERWISE IS TOTALLY IRRESPONSIBLE! >>> >>>Grant Colvin >>>1102 White Cliff Drive >>>San , California 95129 >>> >>>Phone: (408) 257-1506 >>>EMAIL: patcolvin@... >>> >>>SO THERE! >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2002 Report Share Posted July 20, 2002 Hi Terri! Pamela Rae posted the site, www.hepcassoc.org. The letter is under "To whom it may concern". Gee, I am a scrapbooker, and it never occurred to me to do a book about it! I will now, thanks for the reminder. I have been keeping a journal, so it should be easy to start a book. Hope all is well with you, Terri. Lots of love, Marilyn Letter Hi Folks, Terri with 2rs here, I remember someone said they had found a letter written on another web site explaining what it was like to Hep-C to people who did not. I would really like to read this letter, plus it might come in handy too! I have been keeping a scrap book, and I know I will probably want to add it. I hope everyone is doing ok, and the aches and pains are not to bad. Love Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2003 Report Share Posted May 9, 2003 I just got a letter from my insurance company!!! I had sent them a letter saying that I felt they should reconsider their stance on Lap Band surgery. I figured it wouldn't help me, but it might help someone else because I have an exclusion in my policy. Son of a gun, my husband called me at work to tell me that tthe insurance had written me and said that they had reconsidered their stance and " Our records show that on February 11, 2003 this procedure was updated to allow certain Lap Band procedures when all medical necessity criteria are met. " Be darned. Now I'm going to get hold of my PCP. I called the people at the insurance and they would not give me the procedure code--said the doctor would have to figure out what code to use. Dancing, dancing........maybe I can spend all the money from the house refinance to remodel the kitchen AND the bathroom instead of the surgery. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2003 Report Share Posted June 25, 2003 Sorry that is what I have and used. NML@... She gave me a number but I don't know if it is valid anymore. 1-800-638-2041 ext. 141. Good luck and let me know what you find out. Angie and Jenna Letter OK~I just found out why I haven't been getting a response to my email to Leonard....NML@... isnt her email address anymore. Unless I wrote it down wrong which I am about to check in the archives =)....anywho does anyone else have the email address? Or do you all have the same one? Rhiannon,txBryce 11 months and waiting to be banded!For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2003 Report Share Posted June 25, 2003 thanks angie i called but i didnt work....ill find it! thanks for the help! Rhiannon, tx Bryce 11 months >From: " JASON POPE " <angie_and_jason@...> >Reply-Plagiocephaly ><Plagiocephaly > >Subject: Re: Letter >Date: Wed, 25 Jun 2003 10:05:59 -0500 > >Sorry that is what I have and used. NML@... She gave me a number >but I don't know if it is valid anymore. 1-800-638-2041 ext. 141. >Good luck and let me know what you find out. > >Angie and Jenna > Letter > > > OK~ > I just found out why I haven't been getting a response to my email > to Leonard....NML@... isnt her email address > anymore. Unless I wrote it down wrong which I am about to check in > the archives =)....anywho does anyone else have the email address? > Or do you all have the same one? > > Rhiannon,tx > Bryce 11 months and waiting to be banded! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2003 Report Share Posted June 25, 2003 Sorry. That's the info that was on the letter she sent me. The letter also had this number 1-800-638-2041 ext. 136. That isn't that lady's extension but maybe it will put you in touch with someone who can help. Good luck! Angie thanks angie i called but i didnt work....ill find it! thanks for the help!Rhiannon, txBryce 11 months>>>Sorry that is what I have and used. NML@... She gave me a number >but I don't know if it is valid anymore. 1-800-638-2041 ext. 141. >Good luck and let me know what you find out.>>Angie and Jenna> Letter>>> OK~> I just found out why I haven't been getting a response to my email> to Leonard....NML@... isnt her email address> anymore. Unless I wrote it down wrong which I am about to check in> the archives =)....anywho does anyone else have the email address?> Or do you all have the same one?>> Rhiannon,tx> Bryce 11 months and waiting to be banded!>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 Thank you Judi and God Bless, Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 I found out Federal Employees are not covered under the ADA. Its the Rehabilitation act instead. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 Hi Janet, I have been following your story for some time as a member of this board. It is so outrageous what the government can get away with. I am sure you have exhausted all your options through the Navy legal system. I am also a mold survivor. Keep up the good work in drawing attention to this mold issue! I am so sorry about what you have had to endure. Judi On Jan 20, 2005, at 12:36 PM, Gingersnap1964@... wrote: > > Subj: Janet s Mold Portsmouth Naval Shipyard > Date: 1/20/2005 9:12:41 AM Pacific Standard Time > From: Gingersnap1964 > rep.tomallen@..., senator@..., > _Morin@..., president@..., > Olympia@... > CC: barry.michael@..., Deidre_@..., > joel.segal@..., .Conyers@..., > .W.sey@..., > rep.mikemichaud@..., RepSally.Lewin@..., > sallymehse@..., sanders.william@... > BCC: > > > > Dear Senators and Congressmen, >     This is Janet s again. I just spent TWO weeks in the > hospital > because of my asthma. Asthma I never had until I got sick from the > mold infested > basement at the Portsmouth Naval Shipyard in Portsmouth, NH. >      Why is it so hard to convince you all that this is a serious > condition > and that I am entitled to Workmen's Comp? Not the lies and the threats > they > tell me, but money due to live on and medications? I almost died. I > spent two > weeks on oxygen and heavy steroids. >         Wake up. I have been asking for help for almost two years! > They > cleaned this basement with Hazmat suits and they were allowed to hold > back a > report saying how dangerous this basement was! THEY arent in the > hospital. THEY > arent living day by day with air cleaners,. THEY arent taking anti > fungals that > make you get worse before you get better. THEY force me out on > retirement of > 400 dollars MONTH!!!!!!!!!!!!! >         My workmens comp is now in the hands of a doctor in a moldy > meat > market clinic in North Andover, Mass. If I have to get skin tested > again, > WHO....and I ask WHO ....will be responsible when this puts me in the > hospital? Will > someone sign a form saying they are responsible? Or will I be on my > own AGAIN > sick and in need of help? >           When will my nightmare end? Who in America is going to help > me? > Janet s > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 Have you looked at the ADA? They stop short in the ADA of declaring environmental illness/chemical sensitivities as included - saying instead that it will be treated on a case by case basis. You would certainly be covered. Once considered covered, dirty doctors offices who do not take steps to properly address your problem would be in violation of the ADA. I don't know the methods to get that designation - perhaps someone else on this board might. I know this seems kind of off track from what you've been trying for but it might help it in the long run...something like " I've been declared covered under the Americans with Disabilities Act - why won't you address this? " I too feel for you - when you feel your worst is not the time to have to deal with these things - but they have to be dealt with. winslake > Subj: Janet s Mold Portsmouth Naval Shipyard > Date: 1/20/2005 9:12:41 AM Pacific Standard Time > From: Gingersnap1964 > rep.tomallen@m..., senator@c..., > _Morin@s..., president@w..., Olympia@s... > CC: barry.michael@e..., Deidre_@c..., > joel.segal@m..., .Conyers@m..., .W.sey@s..., > rep.mikemichaud@m..., RepSally.Lewin@l..., > sallymehse@c..., sanders.william@e... > BCC: > > > > Dear Senators and Congressmen, >     This is Janet s again. I just spent TWO weeks in the hospital > because of my asthma. Asthma I never had until I got sick from the mold infested > basement at the Portsmouth Naval Shipyard in Portsmouth, NH. >      Why is it so hard to convince you all that this is a serious condition > and that I am entitled to Workmen's Comp? Not the lies and the threats they > tell me, but money due to live on and medications? I almost died. I spent two > weeks on oxygen and heavy steroids. >         Wake up. I have been asking for help for almost two years! They > cleaned this basement with Hazmat suits and they were allowed to hold back a > report saying how dangerous this basement was! THEY arent in the hospital. THEY > arent living day by day with air cleaners,. THEY arent taking anti fungals that > make you get worse before you get better. THEY force me out on retirement of > 400 dollars MONTH!!!!!!!!!!!!! >         My workmens comp is now in the hands of a doctor in a moldy meat > market clinic in North Andover, Mass. If I have to get skin tested again, > WHO....and I ask WHO ....will be responsible when this puts me in the hospital? Will > someone sign a form saying they are responsible? Or will I be on my own AGAIN > sick and in need of help? >           When will my nightmare end? Who in America is going to help me? > Janet s > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2005 Report Share Posted January 21, 2005 Okay, this will sound a little sly but since they won't cover workmen's comp and you are no longer a federal employee - maybe it would apply? I'm sorry. winslake > I found out Federal Employees are not covered under the ADA. Its the > Rehabilitation act instead. > Janet > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 Tami, I think the idea of a counselor is a good one actually. I see one once a week. She deals with people with chronic illness and we are starting a support group for her patients. She helps me to live a quality of life within the perimeters of my illness. Granted before the fibromyalgia and css I had a better quality of life, but not full like others. For 23 years I lived my life differently than most people I knew because of Samters. Please get the book The Chronic Illness Experience by Cheri Register. Share it with your mate so he can see the effects of disease on daily life. Also, don't take this as defiance, but, you have a right to care for your health without explaining to anyone why you can't function on certain days. They don't need to understand this illness to care that you are not 100% there on any given day, though maybe realizing the limits it has placed on some of us will help. I spent the entire past 23 years on/off prednisone and it's side effects. I have used bronchodilaters/steroid inhalers/nasal steroids the whole time too. I always have a nebulizer on hand. My mornings have always consisted of trying to clear out my sinus/lungs. How romantic is that? I have spent more time sick than well. There were times I could work and attend college or raise my children, and then times when people had to come and take care of me and my kids while my husband worked. I spent many months hospitalized because of this. My sex life was hit or miss, and I was always scared my husband would leave because I wasn't healthy enough to be as active as he liked. I am now divorced and my health issues were a factor for both of us. What is ironic is that because I couldn't work, I lost my health insurance, my apartment, my car, and now am living at my ex-husbands house so I can be with my children on a daily basis. I can't care for myself totally now, nor care for my children alone so my daughter lives here too and helps me. If you need to talk, you are welcome to call me...231-544-3048...identify yourself from the group. Good luck and hopefully you help your mate understand. Trudy. > can a few people please post a letter about how this disease has affected and changed their lives. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 I will try to get to this -- if you don't hear from me or others in the next couple of weeks ask again (I'm swamped right now). I hope the Samters foundation will be able to have information that will really help with this, and I'm sorry that it's not available just yet. When you say " the samters site " what are you referring to? Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 Tami, My husband really didn't get it for a long time. It is hard when many symptoms are not obvious. He has since witnessed several bad asthma spells that have come out of the blue. It scared him and he takes the situation more seriously.it is hard to never know how I am going to feel from day to day or sometimes min. to min. It is hard to get excited about something when I always wonder-- I hike sounds nice but what if I can't breath? or this is a nice meal out I hope there's nothing in it that will bother me! I am often tired and have learned to be a strong advocate for myself and not care if I seem lazy. being really sick is much worse than someone thinking I'm not doing my fair share. I have learned to be strong about setting limits. good luck, letter can a few people please post a letter about how this disease has affected and changed their lives. What it has done to them regarding work, functioning every day, dealing with chronic pain etc. I've checked the samters site and all it really does is list what the symptoms are but not how it affects peoples everyday lives. I'm not trying to be depressing or dramatic, I just would like my husband to read what this disease is like for other people. He's one of these people that think that if somethings broke there's always a way to fix it. He really does try to understand but since it isn't a disease that many people have or anyone we know for that matter, it's hard for him to comprehend. For instance, last summer when strawberry season came, I did great for the 1st week or so (working 14 hour days, everyday) but when it caught up to me, I never recovered for the whole summer. I could hardly motivate to physically work. I still worked everyday, but very slowly. I just looked like I was lazy. He's the type that says when there's work to be done you have to do it regardless of how you feel. He had no clue that my energy leveled dropped to almost zero. I also had headaches everyday which really depleated me. I'm not a quitter, I never was, but I just really need him to understand that it's the disease that does this to me. Doesn't anyone else have trouble with their spouse understanding this disease? I'm not looking for sympathy from him, just simple compassion. I probably should see a councelor about this, but explaining this disease to one more doctor would about send me over the edge. If you feel this isn't something that should be discussed openly here please let me know. I won't be offended. Tami in Wis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 Thank you Lori. I'm speaking about the group site. I went to the ent today. We talked for quite a while. I decided to stay on the Celebrex to help with the inflamation. He sucked out my snout and other than a bad headache from agravation, I think I should feel better tomorrow. If cleaning out the mold doesn't solve my headache problem we are going to discuss further about putting shunts in my frontals so they drain. I discussed my frustration about not being able to do steroids and we decided to try flonase and pray that my retina doesn't detach. I think I just need a couple of weeks without pain to rejuvenate. I'm going to continue to do demerol a few times a week just to escape the headaches and pray I can be fit by april for all my field work. Thanks so much for responding. Tami Re: letter I will try to get to this -- if you don't hear from me or others in the next couple of weeks ask again (I'm swamped right now).I hope the Samters foundation will be able to have information that will really help with this, and I'm sorry that it's not available just yet. When you say "the samters site" what are you referring to?Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 trudy, Thanks so much for your letter. I appreciate all the support so much from this group. What would I do if I always had to face this by myself. I think you're right about the counceler. I've been kidding myself thinking I can handle this. I've been spending way too much time letting this disease control me. I need to be in control of it. sincerely, Tami Re: letter Tami, I think the idea of a counselor is a good one actually. I see one once a week. She deals with people with chronic illness and we are starting a support group for her patients. She helps me to live a quality of life within the perimeters of my illness. Granted before the fibromyalgia and css I had a better quality of life, but not full like others. For 23 years I lived my life differently than most people I knew because of Samters. Please get the book The Chronic Illness Experience by Cheri Register. Share it with your mate so he can see the effects of disease on daily life. Also, don't take this as defiance, but, you have a right to care for your health without explaining to anyone why you can't function on certain days. They don't need to understand this illness to care that you are not 100% there on any given day, though maybe realizing the limits it has placed on some of us will help. I spent the entire past 23 years on/off prednisone and it's side effects. I have used bronchodilaters/steroid inhalers/nasal steroids the whole time too. I always have a nebulizer on hand. My mornings have always consisted of trying to clear out my sinus/lungs. How romantic is that? I have spent more time sick than well. There were times I could work and attend college or raise my children, and then times when people had to come and take care of me and my kids while my husband worked. I spent many months hospitalized because of this. My sex life was hit or miss, and I was always scared my husband would leave because I wasn't healthy enough to be as active as he liked. I am now divorced and my health issues were a factor for both of us. What is ironic is that because I couldn't work, I lost my health insurance, my apartment, my car, and now am living at my ex-husbands house so I can be with my children on a daily basis. I can't care for myself totally now, nor care for my children alone so my daughter lives here too and helps me. If you need to talk, you are welcome to call me...231-544-3048...identify yourself from the group. Good luck and hopefully you help your mate understand. Trudy.> can a few people please post a letter about how this disease has affected and changed their lives. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 Thank you . Tami letter can a few people please post a letter about how this disease has affected and changed their lives. What it has done to them regarding work, functioning every day, dealing with chronic pain etc. I've checked the samters site and all it really does is list what the symptoms are but not how it affects peoples everyday lives. I'm not trying to be depressing or dramatic, I just would like my husband to read what this disease is like for other people. He's one of these people that think that if somethings broke there's always a way to fix it. He really does try to understand but since it isn't a disease that many people have or anyone we know for that matter, it's hard for him to comprehend. For instance, last summer when strawberry season came, I did great for the 1st week or so (working 14 hour days, everyday) but when it caught up to me, I never recovered for the whole summer. I could hardly motivate to physically work. I still worked everyday, but very slowly. I just looked like I was lazy. He's the type that says when there's work to be done you have to do it regardless of how you feel. He had no clue that my energy leveled dropped to almost zero. I also had headaches everyday which really depleated me. I'm not a quitter, I never was, but I just really need him to understand that it's the disease that does this to me. Doesn't anyone else have trouble with their spouse understanding this disease? I'm not looking for sympathy from him, just simple compassion. I probably should see a councelor about this, but explaining this disease to one more doctor would about send me over the edge. If you feel this isn't something that should be discussed openly here please let me know. I won't be offended. Tami in Wis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2005 Report Share Posted March 14, 2005 I really don't know if I have Sampter's or not. It's an interesting possibility since I've been taking an aspirin a day for the past 18 heart-healthy years. Have had anosmia for the past 4+ years. Prednisone bursts work great, then stop working a few days later. Corticosteroid sprays work fine for congestion, but don't think the sprays reach the top of my nasal cavity very well to help the anosmia (my loss of smell is from inflammation and/or polyps where the airspace between the top (superior) turbinate and the roof of my nasal cavity closes up. Olfactory nerves at the top don't get any airflow). I know I don't have infectious rhinitis and have been through the antibiotic process. I've taken all the allergy tests to eliminate allergic rhinitis. My sinuses are fine. That leaves irritative (vasomotor) rhinitis that I'm still trying to figure out. But a recent allergy doctor did help a bit. He prescribed a quick burst of prednisone (6-7 days) starting at the same time as a daily dose of Singulair (10mg/day), long term. When the Prednisone period was complete, I had achieved an air space that allowed odors to pass by my olfactory nerves. Then I began a daily spray in each nostril of Nasacort AQ corticosteroid to maintain the airspace opening. After each spray I laid down and tipped my head back off a bed to try to move the fluid to the top of my nasal cavity. The doctor said that polyps give off leukotrienes, hence the Singulair. Had very little congestion, if any, and a good sense of smell and taste for 5 months. It was wonderful !!!! Then I went out and got drunk and took two aspirin before going to sleep about the same time that I ran out of Singulair. I woke up congested and haven't been able to taste or smell a thing since. Now I'm trying to figure out what the culprit was. Aspirin or scotch. I find it interesting that Sampter's Triad involves sensitivity to aspirin (and all the other products containing it), and that acetylsalicylic acid, or aspirin, results in excess production of leukotrienes. Just a few thoughts that might help. Am about to start the process all over again but also stopped taking aspirin 3 days ago. This whole thing sure is a mystery wrapped in an enigma. in Arizona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2005 Report Share Posted March 14, 2005 Hi Tami I don't think that a NonSamterite can understand. Pain and or just discomfort is impossible to communicate. I often try, when asked, to tell people about the disease, and they just don't get it. They normally say, oh yeah I have alleriges too, and then they tell me their symptoms which are NOTHING like we experience almost every minute of our lives. Now instead of even mentioning Samters, I just say allergies it's just simpler, though Samters is more than just an allergy. I am just today, getting over my latest bout. 2 more days of anitbotics and I hope to be back to seminormal. I've had Samters for 5 years, and I feel very fortunate after reading these email that I, at least for now, have had much success in dealing with the problems associated with Samters. Anyway don't give up we will overcome... Dan in Los Angeles --- Tami Klumpyan <tami@...> wrote: > Thank you . > Tami > > letter > > > can a few people please post a letter about how > this disease has affected and changed their lives. > What it has done to them regarding work, functioning > every day, dealing with chronic pain etc. I've > checked the samters site and all it really does is > list what the symptoms are but not how it affects > peoples everyday lives. I'm not trying to be > depressing or dramatic, I just would like my husband > to read what this disease is like for other people. > He's one of these people that think that if > somethings broke there's always a way to fix it. He > really does try to understand but since it isn't a > disease that many people have or anyone we know for > that matter, it's hard for him to comprehend. For > instance, last summer when strawberry season came, I > did great for the 1st week or so (working 14 hour > days, everyday) but when it caught up to me, I never > recovered for the whole summer. I could hardly > motivate to physically work. I still worked > everyday, but very slowly. I just looked like I was > lazy. He's the type that says when there's work to > be done you have to do it regardless of how you > feel. He had no clue that my energy leveled > dropped to almost zero. I also had headaches > everyday which really depleated me. I'm not a > quitter, I never was, but I just really need him to > understand that it's the disease that does this to > me. Doesn't anyone else have trouble with their > spouse understanding this disease? I'm not looking > for sympathy from him, just simple compassion. I > probably should see a councelor about this, but > explaining this disease to one more doctor would > about send me over the edge. If you feel this isn't > something that should be discussed openly here > please let me know. I won't be offended. > Tami in Wis > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 Enjoyed your letter . I am not sure if you have Samters either! Do you have chronic sinus polyps, asthma, aspirin sensivtivity? Those are the critera for it though it sounds from your meds you have a lot like this going on. Let us know what your new round of treatment is. Good luck. Trudy. > I really don't know if I have Sampter's or not. It's an interesting > possibility since I've been taking an aspirin a day for the past 18 heart-healthy > years. Have had anosmia for the past 4+ years. Prednisone bursts work great, > then stop working a few days later. Corticosteroid sprays work fine for > congestion, but don't think the sprays reach the top of my nasal cavity very well to > help the anosmia (my loss of smell is from inflammation and/or polyps where the > airspace between the top (superior) turbinate and the roof of my nasal cavity > closes up. Olfactory nerves at the top don't get any airflow). > > I know I don't have infectious rhinitis and have been through the antibiotic > process. I've taken all the allergy tests to eliminate allergic rhinitis. My > sinuses are fine. That leaves irritative (vasomotor) rhinitis that I'm still > trying to figure out. But a recent allergy doctor did help a bit. He > prescribed a quick burst of prednisone (6-7 days) starting at the same time as a > daily dose of Singulair (10mg/day), long term. When the Prednisone period was > complete, I had achieved an air space that allowed odors to pass by my olfactory > nerves. Then I began a daily spray in each nostril of Nasacort AQ > corticosteroid to maintain the airspace opening. After each spray I laid down and tipped > my head back off a bed to try to move the fluid to the top of my nasal > cavity. The doctor said that polyps give off leukotrienes, hence the Singulair. Had > very little congestion, if any, and a good sense of smell and taste for 5 > months. It was wonderful !!!! > > Then I went out and got drunk and took two aspirin before going to sleep > about the same time that I ran out of Singulair. I woke up congested and haven't > been able to taste or smell a thing since. Now I'm trying to figure out what > the culprit was. Aspirin or scotch. I find it interesting that Sampter's > Triad involves sensitivity to aspirin (and all the other products containing it), > and that acetylsalicylic acid, or aspirin, results in excess production of > leukotrienes. > > Just a few thoughts that might help. Am about to start the process all over > again but also stopped taking aspirin 3 days ago. This whole thing sure is a > mystery wrapped in an enigma. > > in Arizona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 In a message dated 3/15/2005 4:45:44 AM US Mountain Standard Time, iamthezookeeper@... writes: Do you have chronic sinus polyps, asthma, aspirin sensitivity? Those are the criteria for it though it sounds from your meds you have a lot like this going on. Let us know what your new round of treatment is. Good luck. Trudy. Trudy, From reading about Samters, a number of factors seemed to fit. First came congestion, followed by anosmia about 4 years ago. Later I began to notice some constriction in breathing, some wheezing and some difficulty swallowing. The sense I had was the inflammation was progressing from my nasal passage down into my esophagus. I don't know if it was the onset of asthma since I've never been told I had it, but it felt like I imagined mild asthma would feel like. Maybe I was progressing, but never had a rash, just a box of Kleenex in every room of the house. Only recently did doctor #3 shine a flashlight in my nose and tell me I had polyps. When I asked how he could see polyps when two other doctors didn't, he said he looks in a lot of noses. Maybe the inflammation hadn't evolved into polyps earlier. But I still had a sinking feeling that 50% of doctors graduate in the bottom half of their class. He told me not to stop taking my aspirin a day and prescribed the quick hit of prednisone, Singulair and the steroid nose spray. I tried later to back off the Singulair but found the congestion/sneezing came back and the stuff really seemed to help. Now I was really hooked on this doctor for a quarterly $40 co-pay visit. Anyway, after reading about aspirin sensitivity and the similar reaction I was having, I held off of Singulair again and stopped my 18 year aspirin a day routine. I'm on day 4 without aspirin or Singulair and woke up this morning with a completely dry nose. So now I'm avoiding the steroid nasal spray to see what happens next. So far, I don't notice anything but haven't started getting back a sense of smell. If the ASA was so dominant in my system, it may have signaled my adrenal cortex to reduce the amount of natural corticosteroid necessary to counter inflammation (hypothesis #389). So more time may be necessary to decide what the next treatment should be. Hopefully, no further treatment will be necessary but I'm only in day 4 of this quest. One other wild card in my search for truth is I substituted a daily great big fat fish oil softgel (O3 and O6) for my aspirin to keep heart healthy or delude myself to believe I was. Maybe fish oil is helping my inflammation (hypothesis #390). Or maybe I'm less stressed today (hypothesis #391). One thing I did find very useful was a brief spurt of Prednisone for anosmia. In that it worked, it told me I was dealing with a rhinitis inflammation or sinus issue rather than something else. From there I could focus on allergy tests, antibiotics etc. and start the process of elimination via a diary of events etc. At this point I still haven't seen an ENT and hope I never do. I enjoy watching my GP doctor roll his eyes which tells me he doesn't have a clue. I suppose that's what "vasomotor" means. in Arizona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 ...why do you want to stop the asa a day routine? You are lucky that you can take it actually. Some of can't as we stop breathing. Same with nsaids. At least in my case. I do admire your courage to try to find and treat your own condition as I have depended on the medical community for 23 years. What does your GP think is going on or has he recommended an ENT? I loved your vasomotor comment. Next time my 12 year-old roles his eyes I am going to say " and no vasomotor response from you young man " ...lol. Trudy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 Dan, You're probably right. Thank you for replying. Tami letter> > > can a few people please post a letter about how> this disease has affected and changed their lives. > What it has done to them regarding work, functioning> every day, dealing with chronic pain etc. I've> checked the samters site and all it really does is> list what the symptoms are but not how it affects> peoples everyday lives. I'm not trying to be> depressing or dramatic, I just would like my husband> to read what this disease is like for other people. > He's one of these people that think that if> somethings broke there's always a way to fix it. He> really does try to understand but since it isn't a> disease that many people have or anyone we know for> that matter, it's hard for him to comprehend. For> instance, last summer when strawberry season came, I> did great for the 1st week or so (working 14 hour> days, everyday) but when it caught up to me, I never> recovered for the whole summer. I could hardly> motivate to physically work. I still worked> everyday, but very slowly. I just looked like I was> lazy. He's the type that says when there's work to> be done you have to do it regardless of how you> feel. He had no clue that my energy leveled> dropped to almost zero. I also had headaches> everyday which really depleated me. I'm not a> quitter, I never was, but I just really need him to> understand that it's the disease that does this to> me. Doesn't anyone else have trouble with their> spouse understanding this disease? I'm not looking> for sympathy from him, just simple compassion. I> probably should see a councelor about this, but> explaining this disease to one more doctor would> about send me over the edge. If you feel this isn't> something that should be discussed openly here> please let me know. I won't be offended.> Tami in Wis> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2007 Report Share Posted October 3, 2007 thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Hey Pam let's just say you were having a bad day..... We all have them don't we? Brush it off....... TIZ GONE and now we move forward. Blessings on your New year. Clare in Taz Quote Link to comment Share on other sites More sharing options...
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