Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 I think research and various studies have shown that it isn't the amount of IgA immune complexes that's the problem, but rather that there is a problem with the IgA complexes themselves. There are ways to lower circulating IgA, but it has been demonstrated that doing this has no effect on IgAN. Pierre Tonsillectomy > Dear Pete, > > Thank you so much for sharing your experience. I have decided to try stopping dairy and gluten. Maybe that's why my tonsils are the way they are. Maybe my intestines and tonsils will stop making so much IgA that way. > > Your email makes a lot of sense. Should I do the vinegar thing only when I'm having trouble or every day to prevent? > > Thank you. > > Rotghi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 Dear Rotghi, I had my tonsils removed in December of 2001 right after IGAN diagnosis even if I didn't have a lot of problems with them as an adult. Some reports seem to say it's effective to slow down IGAN for some people. Personally, I don't think it helped me. However, It may be beneficial to you if you experienced tonsillitis/strap throats often, (my theory is) IGAN is caused by the accumulation of antibodies in the kidneys, any measure to lessen the possibility of triggering the body's defense mechanism is beneficial to me. My personal experience is this, my creatinine was 1.0 in 1994, during the period of 1996 through 1999 I had severe raspirtory flare ups that were treated as flu/or common cold without realizing they were in fact allergies - I had never had allergy problems my entire life until then. During that time my creatinine jumped from 1.0 (1994)to 1.9 (1999). I blame the rapid progression to the flare ups and less than optimal blood pressure control. After better allergy and blood pressure control, my creatinine stays constant at around 1.9 since 1999. As far as the tonsillectomy, the surgery itself isn't too bad. The recovery, however, requires careful monitoring for adults (I was 47 then). I recovered fine the first week or so, but experienced bleeding, low blood pressure and out of balance electrolyte the second week (caused by diarrhea brought upon by the antibiotics prescribed). Drink some liquid diet food (such as Ensure) may help sustain your body during recovery. Just some personal experience for your information. > Thanks Karie, > > I'm not sure how minor it is in an adult. For some reasons adults don't > sail through like kids. My friend hemorraged 7 days after because > the scab came off. They told her it was because she didn't drink enough > water though, so I guess it mostly can be avoided. Then there's > always the risk of surgery and being under general anaesthesia. I am > going to consult with a good ENT and nephrologist. > > Take care, > > rotghi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 what are you talking about the vinegar thing????,,,,,,, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 That's dissapointing. So, you think the oligo-antigenic diet and/or removing problematic tonsils wouldn't do any good in most cases? Rotghi > > > Date: 2003/06/06 Fri AM 10:10:32 EDT > To: <iga-nephropathy > > Subject: Re: Tonsillectomy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 Thanks , How do you control your allergies? rotghi > > > Date: 2003/06/06 Fri AM 11:09:55 EDT > To: iga-nephropathy > Subject: Re: Tonsillectomy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 on 6/6/03 7:03 AM, rotghi@... at rotghi@... wrote: > Dear Pete, > > Thank you so much for sharing your experience. I have decided to try stopping > dairy and gluten. Maybe that's why my tonsils are the way they are. Maybe my > intestines and tonsils will stop making so much IgA that way. > > Your email makes a lot of sense. Should I do the vinegar thing only when I'm > having trouble or every day to prevent? > > Thank you. > > Rotghi > >> >> >> Date: 2003/06/06 Fri AM 06:41:34 EDT >> To: iga-nephropathy >> Subject: Re: Proteinuria >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 Because Streptococi is such a difficult germ to eliminate, and the risks to Igan patients, are huge. Apple cider vinegar has been shown to eliminate this.Especially effective, is the apple cider vinegar gargle, but swallowing some of the gargle is essential, as part of the therapy. Removing the tonsils, opens up a greater risk (if one gets streptococi) for igan patients. Pete. cryslo864@... wrote: what are you talking about the vinegar thing????,,,,,,, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 The apple cider vinegar gargle, is only necessary if you have a strep throat. A teaspoon of apple cider vinegar in a glass of water daily is helpful, as a preventative. Pete. ELSIE STEPHENS wrote: on 6/6/03 7:03 AM, rotghi@... at rotghi@... wrote: > Dear Pete, > > Thank you so much for sharing your experience. I have decided to try stopping > dairy and gluten. Maybe that's why my tonsils are the way they are. Maybe my > intestines and tonsils will stop making so much IgA that way. > > Your email makes a lot of sense. Should I do the vinegar thing only when I'm > having trouble or every day to prevent? > > Thank you. > > Rotghi > >> >> From: Hallam >> Date: 2003/06/06 Fri AM 06:41:34 EDT >> To: iga-nephropathy >> Subject: Re: Proteinuria >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 I am just pointing out that the tonsils prevent germs like strep throat from going further. This can be a significant cosideration if you have been diagnosed as having igan. Several Doctors have warned me, that my kidneys could not survive another attack of Streptococi!! And I must be vigilant in this regard. Pete. rotghi@... wrote: That's dissapointing. So, you think the oligo-antigenic diet and/or removing problematic tonsils wouldn't do any good in most cases? Rotghi > > From: " Pierre L (groups) " > Date: 2003/06/06 Fri AM 10:10:32 EDT > To: > Subject: Re: Tonsillectomy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 Gargling with cider vinegar to get rid of strep or avoid getting strep. I guess it's a home remedy. Haven't tried it yet. > > From: cryslo864@... > Date: 2003/06/06 Fri PM 10:39:02 EDT > To: iga-nephropathy > Subject: Re: Tonsillectomy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 Thanks! > > > Date: 2003/06/07 Sat AM 04:50:27 EDT > To: iga-nephropathy > Subject: Re: Tonsillectomy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 Call it a home remedy or whatever you like! The facts have been documented for more than 70 years, in both Humans and cattle. Tonsillectomy has been very contraversial, for many years. Some Dr's will advise yes, and some no. One thing is certain, no antibiotic will kill a streptococi germ. So what do you do to get rid of it? In my case, I have no other choice. rotghi@... wrote: Gargling with cider vinegar to get rid of strep or avoid getting strep. I guess it's a home remedy. Haven't tried it yet. > > From: cryslo864@... > Date: 2003/06/06 Fri PM 10:39:02 EDT > To: iga-nephropathy > Subject: Re: Tonsillectomy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 Hi , I think we have to be very careful about the advice we give each other here. When you said " no antibiotic will kill a streptocci germ " , I think you might have meant that antibiotics are ineffective in addressing the the relatively uncommon secondary and tertiary effects of strep. Antiobiotics remains an effective tool in eliminating infectious diseases - including strep.. While antiobiotic resistent cultures present an occational problem, we don't want to misguide people Just my two cents. Cy Re: Tonsillectomy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 Dear , I have a feeling you thought I was downplaying vinegar by referring to it as a home remedy. That was definitely not my intention. I have the utmost respect for home remedies and many of them are extremely effective. I'm certainly going to try the vinegar as a preventative myself. By the way, for people who tend to get " swimmer's ear " white vinegar placed in the ear once a day is very effective. Some medications for treatment of the same have acetic acid in them -- vinegar. Take care, Rotghi Hallam wrote: > Call it a home remedy or whatever you like! > The facts have been documented for more than 70 years, in both Humans > and cattle. > > Tonsillectomy has been very contraversial, for many years. Some Dr's > will advise yes, and some no. > One thing is certain, no antibiotic will kill a streptococi germ. > So what do you do to get rid of it? > In my case, I have no other choice. > > rotghi@... wrote: > Gargling with cider vinegar to get rid of strep or avoid getting > strep. I guess it's a home remedy. Haven't tried it yet. > > > > From: cryslo864@... > > Date: 2003/06/06 Fri PM 10:39:02 EDT > > To: iga-nephropathy > > Subject: Re: Tonsillectomy > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2003 Report Share Posted June 8, 2003 Dear Rotghi, Thanks for the tip on white vinegar for swimmers ear! Yes, I guess I had thought you were down playing the apple cider vinegar. Appologies. Pete notghi wrote: Dear , I have a feeling you thought I was downplaying vinegar by referring to it as a home remedy. That was definitely not my intention. I have the utmost respect for home remedies and many of them are extremely effective. I'm certainly going to try the vinegar as a preventative myself. By the way, for people who tend to get " swimmer's ear " white vinegar placed in the ear once a day is very effective. Some medications for treatment of the same have acetic acid in them -- vinegar. Take care, Rotghi Hallam wrote: > Call it a home remedy or whatever you like! > The facts have been documented for more than 70 years, in both Humans > and cattle. > > Tonsillectomy has been very contraversial, for many years. Some Dr's > will advise yes, and some no. > One thing is certain, no antibiotic will kill a streptococi germ. > So what do you do to get rid of it? > In my case, I have no other choice. > > rotghi@... wrote: > Gargling with cider vinegar to get rid of strep or avoid getting > strep. I guess it's a home remedy. Haven't tried it yet. > > > > From: cryslo864@... > > Date: 2003/06/06 Fri PM 10:39:02 EDT > > To: iga-nephropathy > > Subject: Re: Tonsillectomy > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2003 Report Share Posted June 8, 2003 No problem! I guess that email was less wordy than my usual. Maybe sounded like I was being " short. " So sorry if you thought so. I am a huge proponent of natural remedies. Take care! Rotghi > > > Date: 2003/06/08 Sun AM 03:45:24 EDT > To: iga-nephropathy > Subject: Re: Tonsillectomy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2003 Report Share Posted June 8, 2003 You are right. It's especially a problem when my kids are chatting online with their friends. There's no intonation or facial expression, so sometimes it can be misunderstood. Take care, Rotghi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 Rotghi, My apology for late response. My excuse is, again, busy weekend. Flonase is the savior of my allergy problems! > Thanks , > > How do you control your allergies? > > rotghi > > > > > From: " cindy66614 " <cindy66614@y...> > > Date: 2003/06/06 Fri AM 11:09:55 EDT > > To: iga-nephropathy > > Subject: Re: Tonsillectomy > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 Me too. I've been using Flonase for a good 6 years, at least. It saved me from my previous decades of walking through summers like a zombie, drugged up on antihistamines! Pierre Re: Tonsillectomy > Rotghi, > My apology for late response. My excuse is, again, busy weekend. > Flonase is the savior of my allergy problems! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 , Flonase is the best medication I have ever used for allergies. Thom Re: Tonsillectomy > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 So glad! Rotghi > > > Date: 2003/06/09 Mon PM 03:54:26 EDT > To: iga-nephropathy > Subject: Re: Tonsillectomy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 I'm thinking that maybe instead of a tonsillectomy I wonder if using Flonase every day would calm down the tonsills too since then any post nasal drip wouldn't irritate them and get them " riled up. " Also I wonder if some of the Flonase might drip onto the tonsills and work locally on them and ?reduce IgA secretion!! Never know! One of my crazy, but maybe not so crazy theories! Rotghi > > > Date: 2003/06/09 Mon PM 04:53:17 EDT > To: <iga-nephropathy > > Subject: Re: Re: Tonsillectomy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2003 Report Share Posted June 24, 2003 Hi Lillian, (At least I think that may be your name from your email address) I don't know of any cases of IgAN that have gone into complete remission, but that is not to say you can't remain stable. Elvira already posted an excellent response which included that only the minority of people with IgAN ever progress to end stage renal failure regardless of any treatment. If you were plagued with infections, it sounds as if removal of your tonsils may have been in order regardless of having IgAN. Along with Pierre, I do hope you have some positive benefit from the removal of your tonsils. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2003 Report Share Posted June 24, 2003 --- Hi I don't know if there is for sure any benefit of tonsillectomy for IGAN patients...but I do belive that your nose - throat doctor had a reason to order it to you. My son who dosn't have IGAN had his tonsils removed at the age of 6. He was always sick till that time....After the surgery the doctor said that the kid did have any chances to be healthy at all!!! Under his tonsils there were a big holes with pus inside...They removed the stuff as well...After the surgery he did not catch every single infection and the nightmare was over...Now he is 16 - handsome, tall and strong young man. So if you had strep throat very often or so, removing of tonsils should help you a lot...With this IGAN any infection or inflamation is not good for kidney at all. Great that your protein numbers are better! I don't know if it's possible to cure IGAN ....not big chances for that but miracles do happen in this world. As our moderators say only 30 % of people with IGAN will have the total kidney failure in the future. I wish you all the best and never " crossing that bridge " . Sorry for possible mistakes in English but it's not my native language ...people speak Polish at my place Elvira In iga-nephropathy , " alalillian " <alalillian@y...> wrote: > I had my tonsils out on Thursday, on the recommendation of my ears- > nose-throat specialist. He found tremendous evidence of infection > there and said I was a good candidate for tonsillectomy regardless of > my igA condition. Anyway,I'm hopeful for a positive result from the > tonsillectomy. By the way, it's been 6 days since the operation and > I'm finally getting over the hump. > > My protein numbers since I was diagnosed three years ago have gone > from 1210 to 900 to 1000 to 700 and most recently, to 450. My neph > reports everything else is normal. My question is this: are there > cases of igA going away? It would be so encouraging to hear that it > is a possibility, but I have never read a posting from someone for > whom this is the case. > > Also, has anyone ever posted a positive result from tonsillectomy? If > so, that'd be an encouragement as well. > > I really appreciate this site- I don't contribue often, but you are > all in my prayers. Special thanks to Pierre. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2003 Report Share Posted June 24, 2003 Hi Elvira, I think you were a better student of English than I was! By the way, Radek sounds like a wonderful young man. You must be so very proud... Cy Re: tonsillectomy --- Oh, thank you but I am still afraid of doing mistakes But my English teacher would be proud... LOL Thank you once again, Elvira In iga-nephropathy , W4JC@a... wrote: > Elvira, > > What an excellent response to the tonsillectomy post. You have an excellent > command of the English language, so please don't ever apologize! > > You posts are so upbeat and positive and I always enjoy reading them. > > > > > Quote Link to comment Share on other sites More sharing options...
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