Guest guest Posted August 28, 1999 Report Share Posted August 28, 1999 I would like to thank everyone that sent information on the epilepsy question that I had. You have all been very helpful. I would like to say that I am now more relaxed but I think I am even more nervous for my daughter than ever. Are the DR's doing enough? Should I put her on a sleeping monitor? , etc., etc. We see a neurologist on Sept. 10 and hopefully that will put us at ease. Thanks again for your help and keep the information coming. Sincerely Karl Pierick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 1999 Report Share Posted September 23, 1999 Wow, thanks alot that was very informative. I even printed it for my Dr.Thanks again. I would very much like to get in contact with that person you were talking about, Please feel free to give my e-mail address.<br>Jacque<br>PCT/HCV Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 1999 Report Share Posted September 23, 1999 No Problem Jacque, thats what the support system is all about. Here to help each other. Wellllll, anyway that can be another subject LOL<br><br>Gave your e-mail address and you should of received a reply from them. If not let me know, cuz I messed up somewhere.<br>Huggs from Rose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 1999 Report Share Posted December 8, 1999 ... I have no choice about the caffeine.... I would irritate the pheo tissue in my right adrenal gland if I take in any caffeine. I have not touched the stuff in nearly 20 years. Lifestyle changes do not happen over night or even a few months. They take persistence and discipline. Something I had to acquire. When I look back on all this ..I say...I don't blame anyone who does not do it...it is way hard to break habits and change. But.... I do feel better and I do not suffer from lows and highs anymore. I manage to keep the pheo disease under control to prevent anymore organ loss. That pleases me to no end. Good Luck..oh and be gentle folks with yourself ...first. Louise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 1999 Report Share Posted December 8, 1999 Louise: I could take the high protien, the good fat (I use butter and olive oil religiously), the whole organic food. But no caffiene? No ( or little) sugar? Aarrgghh!!!!!! How do you do it? How long did it take for you to get used to it? I have cut back on the caffiene, but I still will get a headache if I forget my one cup in the morning, or at least a Mt. Dew! As far as sugar-forget it-I crave chocolate like you wouldn't believe! I am going on 's advice and starting on copper this week to see if that helps. Looks like I am looking at an entire lifestyle change! Got a few more bad habits to get rid of. Guess as we get older, we have to make sacrifices in order to stay healthy. And I said it would never happen to me!!!!LOL LDunphy@... wrote: > Dear ... > > Thanks again for all the little gems of knowledge. The information about > beepollen filled a big gap for me. Last Spring I started on raw honey and > whole organic yogurt to treat my allying stomach issues (GRED) related to my > genetic disease. My sympathetic nervous system had weakened due to > pheochromocytoma and I was looking at natural remedies to strengthen it. Dr. > was concerned about the amount of carbos I was ingesting and > eventually I cut back. Well my stomach problems still come and go....and my > congestion is horrible again. I am going back on raw honey or the bee pollen > and see what happens. > > Also, back in the early spring when I began your supplement program I was > applying Progesterone cream mid cycle. This therapy had served me well for > many months. During my last two cycles I was miserable ( ask my significant > other) and my alternative doctor suggested I stop the cream and see what > happens. It worked. Seems I can conclude that the mineral program is > balancing out my progesterone and estrogen levels and I do not need > progesterone supplementation anymore. This is good. Nice to have a normal > period this month. Something I have had little luck with for twenty years. > > This supplement program has served me well so far. I have been able to reduce > my Synthyroid from .125 to .10. At NIH they did every test known to man on my > thyroid and describe it as small and healthy at this time. Still hypo but no > signs of the genetic demon I am warding off... Medullary Carcinoma. My doctor > has bought my plea to let me wait another year before considering removal of > my thyroid. Eventually I will have to take real serious its removal but not > anytime soon. > > My TSH level last month was 3.3. My LDL was 107 and HDL 63. I plan to > continue with my organic whole food, good fat(butter, flax and olive oil), > high protein diet( no hormone meats), low carb., no stimulant food (caffeine > of any type) diet.It seems to work for me. Sugar continues to be a problem > and I am working on it. > > thank you for all the work you do. > > In Peace... > Louise > > ------------------------------------------------------------------------ > GRAB THE GATOR! FREE SOFTWARE DOES ALL THE TYPING FOR YOU! > Gator fills in forms and remembers passwords with NO TYPING at over > 100,000 web sites! Get $100 in coupons for trying Gator! > http://clickhere./click/2092 > > eGroups.com Home: hyperthyroidism/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2001 Report Share Posted February 22, 2001 Kim, I have never explored anything other than traditional medicine myself. Also, my MRIs have always been normal as well. I have also had normal EEGs on occasion, so be on the lookout for that too. A 24 hour study may be the best indication. And my new neurologists always insist that my EEGs are sleep deprived tests. Jeanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2001 Report Share Posted April 6, 2001 Amy, If you ask for carafate, it comes in liquid too!!! Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 Jenn, THAT IS SO NOT FAIR! LOL! You are JennBNBad now! HAHA HUGS in Ark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 *evil smile* Thank you, susan, for the compliment! JennBNBad Headmistress, Bad Girls Club Viligidiot@a... wrote: > Jenn, > > THAT IS SO NOT FAIR! LOL! You are JennBNBad now! HAHA > > HUGS > in Ark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2001 Report Share Posted December 10, 2001 That's what we're here for!!!!!!!!!!!! Thank you Thank you to all who have given me support via emails onlist, offlist, and by thought and prayer. I'm feeling a lot less rattled about our truck being vandalized. Thanks for being there! My love to all; Jenn MGB 11-1-00 #300, BMI 48 12-3-01 #171, BMI 27 _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Hi again Micky, I think that the altered blood test results are to be expected - that happens with any of the treatment protocols that have been used. It just varies from person to person how severe it is, and the larger interferon doses do seem to cause more of a drop in the WBC. This kind of stuff is temporary though, and when medication is discontinued levels return to normal. Also, doctors are starting to become more open to using medications to combat this, like Neupogen for low WBC, and Epogen or Procrit for low RBC/Hgb. The autoimmune problems are something else though. They do tend to occur mostly in those who have a genetic trait for these disorders though - all it requires is something to 'trigger' the autoimmune disorder into action. Interferon can cause this, although what it seems to trigger most often is hypothyroidism. Thankfully, serious things like autoimmune hepatitis are rare. I think it's important to keep things in perspective though when it comes to these autoimmune disorders. They very well could have occurred anyway, even without treatment. HCV is suspected of triggering various autoimmune disorders. So are other viruses, such as the Epstein-Barr virus (which causes infectious mononucleosis, and has been specifically implicated in autoimmune hepatitis). If the peg isn't approved there yet, and the only thing the government will provide is the old interferon, why don't you ask about doing daily injections instead of the 3 times a week? The whole reason the pegylated works better is that it keeps a constant supply of interferon in your body, with no periods of time for the virus to rebound. Daily injections mimic the same thing as the pegylated interferons. Standard interferon doesn't last in your body for even 24 hours really (not at significant levels) so the 3 times a week gives a 24 hour break between each injection, plus another extra 24 hours once a week. As fast as the virus replicates it has plenty of time to rebound during those 24 hour periods. One advantage daily dosing has over pegylated is a faster ability to make dosage adjustments when needed, or desired. It can work both ways too. For example, you could start out with high daily doses to really hit the virus hard and fast - then later reduce to a lower dose. Or, if you are on (for example) 5mu daily, and your WBC gets too low, you can reduce to 3mu and perhaps see faster results. These are just various ideas that have popped into my head! I know it's a difficult decision to make, for anyone, but I imagine in your case it is even more difficult. And keep in mind that treatment does NOT automatically mean 'healthy liver, unhealthy being'. Since my year of treatment ended three years ago (this month), even though I was a non-responder, and did develop hypothyroidism during treatment, I feel MUCH better now than I did before. I feel better now than before I even knew I had HCV. I know it's different for everyone, but I think that we tend to hear much more from people who have bad experiences. I think this is normal, most of those who have a viral clearance, or who breeze through treatment, and don't have any problems either during or after, just kind of disappear. They go back to living their normal lives, and we don't really hear from them too often. So mostly we read about and hear about the bad experiences, which is too bad since this often frightens people who get on the internet looking for information, and most everything they read is negative. Even in our local support group here, which is VERY small compared to yours, I've noticed that people who do well tend to stop coming to the meetings, and mostly those who have problems, or don't respond, keep showing up. But these are the people who need the most support and information, so I understand this. It's just too bad that more people with good experiences don't stick around to give a more balanced view to people who are new and seeking information. Good luck, and I hope you keep us informed on how you are doing! Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Hi again Micky, I think that the altered blood test results are to be expected - that happens with any of the treatment protocols that have been used. It just varies from person to person how severe it is, and the larger interferon doses do seem to cause more of a drop in the WBC. This kind of stuff is temporary though, and when medication is discontinued levels return to normal. Also, doctors are starting to become more open to using medications to combat this, like Neupogen for low WBC, and Epogen or Procrit for low RBC/Hgb. The autoimmune problems are something else though. They do tend to occur mostly in those who have a genetic trait for these disorders though - all it requires is something to 'trigger' the autoimmune disorder into action. Interferon can cause this, although what it seems to trigger most often is hypothyroidism. Thankfully, serious things like autoimmune hepatitis are rare. I think it's important to keep things in perspective though when it comes to these autoimmune disorders. They very well could have occurred anyway, even without treatment. HCV is suspected of triggering various autoimmune disorders. So are other viruses, such as the Epstein-Barr virus (which causes infectious mononucleosis, and has been specifically implicated in autoimmune hepatitis). If the peg isn't approved there yet, and the only thing the government will provide is the old interferon, why don't you ask about doing daily injections instead of the 3 times a week? The whole reason the pegylated works better is that it keeps a constant supply of interferon in your body, with no periods of time for the virus to rebound. Daily injections mimic the same thing as the pegylated interferons. Standard interferon doesn't last in your body for even 24 hours really (not at significant levels) so the 3 times a week gives a 24 hour break between each injection, plus another extra 24 hours once a week. As fast as the virus replicates it has plenty of time to rebound during those 24 hour periods. One advantage daily dosing has over pegylated is a faster ability to make dosage adjustments when needed, or desired. It can work both ways too. For example, you could start out with high daily doses to really hit the virus hard and fast - then later reduce to a lower dose. Or, if you are on (for example) 5mu daily, and your WBC gets too low, you can reduce to 3mu and perhaps see faster results. These are just various ideas that have popped into my head! I know it's a difficult decision to make, for anyone, but I imagine in your case it is even more difficult. And keep in mind that treatment does NOT automatically mean 'healthy liver, unhealthy being'. Since my year of treatment ended three years ago (this month), even though I was a non-responder, and did develop hypothyroidism during treatment, I feel MUCH better now than I did before. I feel better now than before I even knew I had HCV. I know it's different for everyone, but I think that we tend to hear much more from people who have bad experiences. I think this is normal, most of those who have a viral clearance, or who breeze through treatment, and don't have any problems either during or after, just kind of disappear. They go back to living their normal lives, and we don't really hear from them too often. So mostly we read about and hear about the bad experiences, which is too bad since this often frightens people who get on the internet looking for information, and most everything they read is negative. Even in our local support group here, which is VERY small compared to yours, I've noticed that people who do well tend to stop coming to the meetings, and mostly those who have problems, or don't respond, keep showing up. But these are the people who need the most support and information, so I understand this. It's just too bad that more people with good experiences don't stick around to give a more balanced view to people who are new and seeking information. Good luck, and I hope you keep us informed on how you are doing! Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 Great Phyllis, And keep your faith in yourself and your own intuitions in the matter of what is best for your unique situation. Zoe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2002 Report Share Posted April 9, 2002 Hi Dawn, Thank you for responding to . I believe he wrote in to let me know that even if he doesn't agree with my views he is supporting me. I think your response has also cleared up some questions of his. I do appreciate and need these groups and even if he doesn't agree I see now that I can continue my fight and he will be there. Much love, Joy Dawn--this is --Joy Fry's boyfriend Date: Wed, 10 Apr 2002 00:59:34 -0000 Hello- I am --Joy's boyfriend--I hope she has talked about me to you (I hope) as she has told me of you--Dawn--I just wrote a letter to your club that express my feelings--to Joy--and to all who deal with SSRI's--I do hope you permit it to be posted--even though it express a somewhat different take on SSRI's--Joy has told me of you and you sound like a person who is not worried to hear a different viewpoint so I hoipe to see it posted I appreciate you taking the time to express your thoughts and feelings. You set a fine example for other friends and family members who have been on the sidelines. Sadly, unless someone has actually been through this experience, or is very close to someone who has, it is very easy for them to feel alieniated. Yes, Joy has spoken to me of you. Recently, she has feared that her activities with this group may be causing for some friction in your relationship. I am truly sorry if this is so. Let me say a personal and private THANK YOU to you for your friendship with Joy--she can always use some more. I find Joy to be a highly intelligent and sensitive individual. I have grown to value her insight and her wisdom. I do consider her to be a true friend, and I hope that one day I will have the good fortune of actually meeting her face to face. I have copied some of the text that you sent to the group so that I can respond to that as well: But (knew there was a But coming didnt you??)--I cant say that I feel as deeply or as commited on the subject. I believe that Joy and others that are reading this MAY have been harmed by SSRI's and that some Doctors who have given out these drugs did not care as much about there patients as they should--nor that every doctor is who in a postion to hand out these drugs has the best interest of there patients in mind--and that some companys the make these drugs are only making these drugs to make the almightly dollar , you stand as an example for many who would support your views. You are right in many respects. We do not know for sure, based on the scientific literature that was commonly available, if the nature of Joy's illness is due to her experience with psychiatric drugs or not. However, it is our mission to solve this puzzle. There are too many now who are experiencing unexplainable health problems after using psychiatric drugs. There is a common thread that must be investigated. It is through the efforts of the members of this group and our affiliate groups that we have uncovered scientific evidence - peer reviewed clinical studies (those that are not published for the world to see), that support our suspicions. We are forwarding our findings to those who can help us make a difference through the legal system, and through other avenues whereby we can bring this question to light for honest and open evaluation and discussion. Justice is what we seek. ---having said this--I also believe that there are some VERY good doctors out there who have NOTHING but the best interests in mind for there patients and that some chemical companys are NOT only in business to make money I think that maybe --just maybe --you folks should stand back a minute and think on that. I have no argument with you here. Not at all. I still believe in the goodness and humanity of mankind. I do not think that any physician goes into this business with the intent to harm. No- again, not at all. I believe that physicians enter this field for the express purpose of fulfilling their innate desire to help mankind. Likewise, I believe we are fortunate for the advances we have made in medicine. Lives are being saved everyday from the miracles that are occuring. Indeed I work for a center where we see miracles occur regularly thanks to advancements in medicine. What I am opposed to are those who disregard human suffering for the sake of the almighty buck. There must needs be an opposition to all things. There will always be good guys and bad guys. Likewise, there must always be an effort to weed out the bad guys. This is what we are attempting to do. And to all of those who are saying right now that I dont have any idea what I am talking about--Me and Joy have been living together for over a year now. In closing--I am not trying to start any wars with anyone--just thought maybe that the other side should be heard from--And lastly--- Joyce Fry---I LOVE YOU Perhaps you were afraid that we would receive you with hostility. I hope you realize we welcome you with open arms! I cannot tell you how much I appreciate you for taking the time to post your message. I hope it will encourage other family members and friends of victims to do likewise. Joy is a lucky gal to have someone to stand by her as you are doing. Of course, you are a lucky guy to have someone as compassionate and as giving of herself, despite her many challenges, as I have found Joy to be! With Respect---- The respect is mutual! The Avenging Angel PS.. I realize that the first part of your message was sent to me privately. However, I do think it is important that my response to you is forwarded to the group, as I feel it is important that as both the list owner and moderator of this group, that my views are known without equivocation. I hope you do not mind. Please sign the petitions at: http://www.petitiononline.com/lilpro http://www.petitiononline.com/oky71.html http://www.petitiononline.com/effexor Please report all adverse drug reactions to: http://www.fda.gov/medwatch/index.html Join the world’s largest e-mail service with MSN Hotmail. Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2002 Report Share Posted April 9, 2002 Hi Dawn, Thank you for responding to . I believe he wrote in to let me know that even if he doesn't agree with my views he is supporting me. I think your response has also cleared up some questions of his. I do appreciate and need these groups and even if he doesn't agree I see now that I can continue my fight and he will be there. Much love, Joy Dawn--this is --Joy Fry's boyfriend Date: Wed, 10 Apr 2002 00:59:34 -0000 Hello- I am --Joy's boyfriend--I hope she has talked about me to you (I hope) as she has told me of you--Dawn--I just wrote a letter to your club that express my feelings--to Joy--and to all who deal with SSRI's--I do hope you permit it to be posted--even though it express a somewhat different take on SSRI's--Joy has told me of you and you sound like a person who is not worried to hear a different viewpoint so I hoipe to see it posted I appreciate you taking the time to express your thoughts and feelings. You set a fine example for other friends and family members who have been on the sidelines. Sadly, unless someone has actually been through this experience, or is very close to someone who has, it is very easy for them to feel alieniated. Yes, Joy has spoken to me of you. Recently, she has feared that her activities with this group may be causing for some friction in your relationship. I am truly sorry if this is so. Let me say a personal and private THANK YOU to you for your friendship with Joy--she can always use some more. I find Joy to be a highly intelligent and sensitive individual. I have grown to value her insight and her wisdom. I do consider her to be a true friend, and I hope that one day I will have the good fortune of actually meeting her face to face. I have copied some of the text that you sent to the group so that I can respond to that as well: But (knew there was a But coming didnt you??)--I cant say that I feel as deeply or as commited on the subject. I believe that Joy and others that are reading this MAY have been harmed by SSRI's and that some Doctors who have given out these drugs did not care as much about there patients as they should--nor that every doctor is who in a postion to hand out these drugs has the best interest of there patients in mind--and that some companys the make these drugs are only making these drugs to make the almightly dollar , you stand as an example for many who would support your views. You are right in many respects. We do not know for sure, based on the scientific literature that was commonly available, if the nature of Joy's illness is due to her experience with psychiatric drugs or not. However, it is our mission to solve this puzzle. There are too many now who are experiencing unexplainable health problems after using psychiatric drugs. There is a common thread that must be investigated. It is through the efforts of the members of this group and our affiliate groups that we have uncovered scientific evidence - peer reviewed clinical studies (those that are not published for the world to see), that support our suspicions. We are forwarding our findings to those who can help us make a difference through the legal system, and through other avenues whereby we can bring this question to light for honest and open evaluation and discussion. Justice is what we seek. ---having said this--I also believe that there are some VERY good doctors out there who have NOTHING but the best interests in mind for there patients and that some chemical companys are NOT only in business to make money I think that maybe --just maybe --you folks should stand back a minute and think on that. I have no argument with you here. Not at all. I still believe in the goodness and humanity of mankind. I do not think that any physician goes into this business with the intent to harm. No- again, not at all. I believe that physicians enter this field for the express purpose of fulfilling their innate desire to help mankind. Likewise, I believe we are fortunate for the advances we have made in medicine. Lives are being saved everyday from the miracles that are occuring. Indeed I work for a center where we see miracles occur regularly thanks to advancements in medicine. What I am opposed to are those who disregard human suffering for the sake of the almighty buck. There must needs be an opposition to all things. There will always be good guys and bad guys. Likewise, there must always be an effort to weed out the bad guys. This is what we are attempting to do. And to all of those who are saying right now that I dont have any idea what I am talking about--Me and Joy have been living together for over a year now. In closing--I am not trying to start any wars with anyone--just thought maybe that the other side should be heard from--And lastly--- Joyce Fry---I LOVE YOU Perhaps you were afraid that we would receive you with hostility. I hope you realize we welcome you with open arms! I cannot tell you how much I appreciate you for taking the time to post your message. I hope it will encourage other family members and friends of victims to do likewise. Joy is a lucky gal to have someone to stand by her as you are doing. Of course, you are a lucky guy to have someone as compassionate and as giving of herself, despite her many challenges, as I have found Joy to be! With Respect---- The respect is mutual! The Avenging Angel PS.. I realize that the first part of your message was sent to me privately. However, I do think it is important that my response to you is forwarded to the group, as I feel it is important that as both the list owner and moderator of this group, that my views are known without equivocation. I hope you do not mind. Please sign the petitions at: http://www.petitiononline.com/lilpro http://www.petitiononline.com/oky71.html http://www.petitiononline.com/effexor Please report all adverse drug reactions to: http://www.fda.gov/medwatch/index.html Join the world’s largest e-mail service with MSN Hotmail. Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2002 Report Share Posted April 9, 2002 Hi Dawn, Thank you for responding to . I believe he wrote in to let me know that even if he doesn't agree with my views he is supporting me. I think your response has also cleared up some questions of his. I do appreciate and need these groups and even if he doesn't agree I see now that I can continue my fight and he will be there. Much love, Joy Dawn--this is --Joy Fry's boyfriend Date: Wed, 10 Apr 2002 00:59:34 -0000 Hello- I am --Joy's boyfriend--I hope she has talked about me to you (I hope) as she has told me of you--Dawn--I just wrote a letter to your club that express my feelings--to Joy--and to all who deal with SSRI's--I do hope you permit it to be posted--even though it express a somewhat different take on SSRI's--Joy has told me of you and you sound like a person who is not worried to hear a different viewpoint so I hoipe to see it posted I appreciate you taking the time to express your thoughts and feelings. You set a fine example for other friends and family members who have been on the sidelines. Sadly, unless someone has actually been through this experience, or is very close to someone who has, it is very easy for them to feel alieniated. Yes, Joy has spoken to me of you. Recently, she has feared that her activities with this group may be causing for some friction in your relationship. I am truly sorry if this is so. Let me say a personal and private THANK YOU to you for your friendship with Joy--she can always use some more. I find Joy to be a highly intelligent and sensitive individual. I have grown to value her insight and her wisdom. I do consider her to be a true friend, and I hope that one day I will have the good fortune of actually meeting her face to face. I have copied some of the text that you sent to the group so that I can respond to that as well: But (knew there was a But coming didnt you??)--I cant say that I feel as deeply or as commited on the subject. I believe that Joy and others that are reading this MAY have been harmed by SSRI's and that some Doctors who have given out these drugs did not care as much about there patients as they should--nor that every doctor is who in a postion to hand out these drugs has the best interest of there patients in mind--and that some companys the make these drugs are only making these drugs to make the almightly dollar , you stand as an example for many who would support your views. You are right in many respects. We do not know for sure, based on the scientific literature that was commonly available, if the nature of Joy's illness is due to her experience with psychiatric drugs or not. However, it is our mission to solve this puzzle. There are too many now who are experiencing unexplainable health problems after using psychiatric drugs. There is a common thread that must be investigated. It is through the efforts of the members of this group and our affiliate groups that we have uncovered scientific evidence - peer reviewed clinical studies (those that are not published for the world to see), that support our suspicions. We are forwarding our findings to those who can help us make a difference through the legal system, and through other avenues whereby we can bring this question to light for honest and open evaluation and discussion. Justice is what we seek. ---having said this--I also believe that there are some VERY good doctors out there who have NOTHING but the best interests in mind for there patients and that some chemical companys are NOT only in business to make money I think that maybe --just maybe --you folks should stand back a minute and think on that. I have no argument with you here. Not at all. I still believe in the goodness and humanity of mankind. I do not think that any physician goes into this business with the intent to harm. No- again, not at all. I believe that physicians enter this field for the express purpose of fulfilling their innate desire to help mankind. Likewise, I believe we are fortunate for the advances we have made in medicine. Lives are being saved everyday from the miracles that are occuring. Indeed I work for a center where we see miracles occur regularly thanks to advancements in medicine. What I am opposed to are those who disregard human suffering for the sake of the almighty buck. There must needs be an opposition to all things. There will always be good guys and bad guys. Likewise, there must always be an effort to weed out the bad guys. This is what we are attempting to do. And to all of those who are saying right now that I dont have any idea what I am talking about--Me and Joy have been living together for over a year now. In closing--I am not trying to start any wars with anyone--just thought maybe that the other side should be heard from--And lastly--- Joyce Fry---I LOVE YOU Perhaps you were afraid that we would receive you with hostility. I hope you realize we welcome you with open arms! I cannot tell you how much I appreciate you for taking the time to post your message. I hope it will encourage other family members and friends of victims to do likewise. Joy is a lucky gal to have someone to stand by her as you are doing. Of course, you are a lucky guy to have someone as compassionate and as giving of herself, despite her many challenges, as I have found Joy to be! With Respect---- The respect is mutual! The Avenging Angel PS.. I realize that the first part of your message was sent to me privately. However, I do think it is important that my response to you is forwarded to the group, as I feel it is important that as both the list owner and moderator of this group, that my views are known without equivocation. I hope you do not mind. Please sign the petitions at: http://www.petitiononline.com/lilpro http://www.petitiononline.com/oky71.html http://www.petitiononline.com/effexor Please report all adverse drug reactions to: http://www.fda.gov/medwatch/index.html Join the world’s largest e-mail service with MSN Hotmail. Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2002 Report Share Posted April 9, 2002 Hi Dawn, Thank you for responding to . I believe he wrote in to let me know that even if he doesn't agree with my views he is supporting me. I think your response has also cleared up some questions of his. I do appreciate and need these groups and even if he doesn't agree I see now that I can continue my fight and he will be there. Much love, Joy Dawn--this is --Joy Fry's boyfriend Date: Wed, 10 Apr 2002 00:59:34 -0000 Hello- I am --Joy's boyfriend--I hope she has talked about me to you (I hope) as she has told me of you--Dawn--I just wrote a letter to your club that express my feelings--to Joy--and to all who deal with SSRI's--I do hope you permit it to be posted--even though it express a somewhat different take on SSRI's--Joy has told me of you and you sound like a person who is not worried to hear a different viewpoint so I hoipe to see it posted I appreciate you taking the time to express your thoughts and feelings. You set a fine example for other friends and family members who have been on the sidelines. Sadly, unless someone has actually been through this experience, or is very close to someone who has, it is very easy for them to feel alieniated. Yes, Joy has spoken to me of you. Recently, she has feared that her activities with this group may be causing for some friction in your relationship. I am truly sorry if this is so. Let me say a personal and private THANK YOU to you for your friendship with Joy--she can always use some more. I find Joy to be a highly intelligent and sensitive individual. I have grown to value her insight and her wisdom. I do consider her to be a true friend, and I hope that one day I will have the good fortune of actually meeting her face to face. I have copied some of the text that you sent to the group so that I can respond to that as well: But (knew there was a But coming didnt you??)--I cant say that I feel as deeply or as commited on the subject. I believe that Joy and others that are reading this MAY have been harmed by SSRI's and that some Doctors who have given out these drugs did not care as much about there patients as they should--nor that every doctor is who in a postion to hand out these drugs has the best interest of there patients in mind--and that some companys the make these drugs are only making these drugs to make the almightly dollar , you stand as an example for many who would support your views. You are right in many respects. We do not know for sure, based on the scientific literature that was commonly available, if the nature of Joy's illness is due to her experience with psychiatric drugs or not. However, it is our mission to solve this puzzle. There are too many now who are experiencing unexplainable health problems after using psychiatric drugs. There is a common thread that must be investigated. It is through the efforts of the members of this group and our affiliate groups that we have uncovered scientific evidence - peer reviewed clinical studies (those that are not published for the world to see), that support our suspicions. We are forwarding our findings to those who can help us make a difference through the legal system, and through other avenues whereby we can bring this question to light for honest and open evaluation and discussion. Justice is what we seek. ---having said this--I also believe that there are some VERY good doctors out there who have NOTHING but the best interests in mind for there patients and that some chemical companys are NOT only in business to make money I think that maybe --just maybe --you folks should stand back a minute and think on that. I have no argument with you here. Not at all. I still believe in the goodness and humanity of mankind. I do not think that any physician goes into this business with the intent to harm. No- again, not at all. I believe that physicians enter this field for the express purpose of fulfilling their innate desire to help mankind. Likewise, I believe we are fortunate for the advances we have made in medicine. Lives are being saved everyday from the miracles that are occuring. Indeed I work for a center where we see miracles occur regularly thanks to advancements in medicine. What I am opposed to are those who disregard human suffering for the sake of the almighty buck. There must needs be an opposition to all things. There will always be good guys and bad guys. Likewise, there must always be an effort to weed out the bad guys. This is what we are attempting to do. And to all of those who are saying right now that I dont have any idea what I am talking about--Me and Joy have been living together for over a year now. In closing--I am not trying to start any wars with anyone--just thought maybe that the other side should be heard from--And lastly--- Joyce Fry---I LOVE YOU Perhaps you were afraid that we would receive you with hostility. I hope you realize we welcome you with open arms! I cannot tell you how much I appreciate you for taking the time to post your message. I hope it will encourage other family members and friends of victims to do likewise. Joy is a lucky gal to have someone to stand by her as you are doing. Of course, you are a lucky guy to have someone as compassionate and as giving of herself, despite her many challenges, as I have found Joy to be! With Respect---- The respect is mutual! The Avenging Angel PS.. I realize that the first part of your message was sent to me privately. However, I do think it is important that my response to you is forwarded to the group, as I feel it is important that as both the list owner and moderator of this group, that my views are known without equivocation. I hope you do not mind. Please sign the petitions at: http://www.petitiononline.com/lilpro http://www.petitiononline.com/oky71.html http://www.petitiononline.com/effexor Please report all adverse drug reactions to: http://www.fda.gov/medwatch/index.html Join the world’s largest e-mail service with MSN Hotmail. Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2002 Report Share Posted May 16, 2002 Hi Barb.... You should be aware that the vast majority of people who access internet sites on scoliosis are either people who are researching the disease and it's treatment for the first time, or people who had problems with their treatment. The vast majority of people who have scoliosis surgery do not have any long-term problems, and go on with their lives. Not having surgery may be the best decision for you, but you should talk to your surgeon and find out from him/her, what types of outcomes he/she typically sees. Don't be afraid to ask the tough questions. Here are some statistics from UCSF, which is where a large number of scoliosis surgeries and revisions are done: Pseudoarthrosis (non-fusion of at least 1 level) 5% Residual pain 5-15% Neurologic injury <5% (no paralysis in >15 years) Infection .5-4% (after anterior surgery alone there was a 1% rate) Pulmonary embolis .5-1% Mortality <1% In addition, UCSF has seen a 69-95% reduction in severity of pain. I hope this helps you get a more accurate picture of expected outcomes. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2002 Report Share Posted May 16, 2002 Barb, Remember, many of us are older and have many years dealing with our backs. We come on here to share our experiences with each other. We do not always make it clear to new, youth that some of our stories are scary. Please read my other post concerning my earlier. Again, I am sorry you got the wrong impression. Yes, if I had to do surgery over again, I would do so. Hopefully, I'd do it before my case got so servre. again, surgery did not cause my problems. I would have died without it. Instead, my quality of life has improved greatly and I am content to do want I can. No regretes. ===== Jeanette __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 Hi Pam, Yes, you can have a serious c-toma without drainage. I had mine out in May this year. It was diagnosed during surgery in February for tympanotomy/possible stapedotomy... which I did not need. That was when the c-toma was found. It had eroded a hole into my balance canal and my facial nerve was "dehisced" from it's normal position. I did have episodes of dizzyness, but never associated that with my ear. I have NEVER in my life had drainage from my ear. I have no dizzyness, nor facial problems since surgery. So I was lucky. Lynn Teenagers don't always tell everything, lol! I had him read about this, and he tells me that alot of it is him, but not the drainage. Can you have a pretty severe cholesteatoma w/o the drainage? Perhaps we are catching this before it's to that point. Nevertheless, I can't wait to find out what is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 Pam- I've had severe c-toma and have never had any foul smelling discharge or any discharge for that matter. Hope this helps and welcome to the group. - > Thanks for the replies. It's nice to know I can come here to chat b/c I don't know of anyone else with this. I'm sure they live around me, I just don't know who they are yet, lol!! My son is scheduled to see the ENT on June 18. It's the earliest app;t open. I guess I wasn't sure about this since he hasn't had the foul smelling drainage (at least I don't think he has). What is interesting.....my son has always had a " foul " odor around his head. I thought perhaps it was from his medications. I know of lots of people who have this when they take psych. medications. But, now I'm wondering if it's from his ears. My son told me today he has gotten so used to his ears popping all the time that he thought it was normal. He's the kind of kid who has had so many intense things happen that perhaps he blew some of this off. Teenagers don't always tell everything, lol! I had him read about this, and he tells me that alot of it is him, but not the drainage. > > Can you have a pretty severe cholesteatoma w/o the drainage? Perhaps we are catching this before it's to that point. Nevertheless, I can't wait to find out what is going on. Another note, my son has always complained about having " mental " issues, and why couldn't he be normal and have a " medical " issue. Well, maybe this is it (although now he regrets making that comment)!!! > > Thanks again. Pls forward any good websites or books when you find them. I appreciate it!!! > > Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 Hi Pam, I had surgery for the c-toma on April 4 of this year. The only symptom I had was a full feeling in my right ear (the one with the c-toma). There were no other symptoms that led me to worry until I went to see the ENT and he found it with a cat-scan. I was not even prone to ear infections. If I had to try and figure out when this thing started to grow, it would be nothing but guessing. I had a bad case of vertigo when I was around 36 (I am closing quickly on 49) which cleared up all be itself within a year, and had probably the first ear infection in my life about 4 years ago. When they got into my ear to remove the c-toma in April, the damage was quite extensive and had destroyed the anvil and hammer portion of my hearing bones. The stirrup or stapes was spared and I will go in for reconstructive surgery in about 10 months. The operation took more than six and one half hours to remove all the tumor. Luckily it had not destroyed the bone area to brain. Anyway, that shows you that everyone's symptoms are different. Welcome to the group. Dave thank you Thanks for the replies. It's nice to know I can come here to chat b/c I don't know of anyone else with this. I'm sure they live around me, I just don't know who they are yet, lol!! My son is scheduled to see the ENT on June 18. It's the earliest app;t open. I guess I wasn't sure about this since he hasn't had the foul smelling drainage (at least I don't think he has). What is interesting.....my son has always had a "foul" odor around his head. I thought perhaps it was from his medications. I know of lots of people who have this when they take psych. medications. But, now I'm wondering if it's from his ears. My son told me today he has gotten so used to his ears popping all the time that he thought it was normal. He's the kind of kid who has had so many intense things happen that perhaps he blew some of this off. Teenagers don't always tell everything, lol! I had him read about this, and he tells me that alot of it is him, but not the drainage. Can you have a pretty severe cholesteatoma w/o the drainage? Perhaps we are catching this before it's to that point. Nevertheless, I can't wait to find out what is going on. Another note, my son has always complained about having "mental" issues, and why couldn't he be normal and have a "medical" issue. Well, maybe this is it (although now he regrets making that comment)!!! Thanks again. Pls forward any good websites or books when you find them. I appreciate it!!! Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 Hi Pam It sounds like your son is handling it all fairly well. My cholesteatoma was extensive but I had no drainage. My son has ADD but no other problems, really healthy ears. That's enough as it is. His dad and I are so glad school is out for the summer so we can take a break from having to help with homework. It sounds like you have plenty to handle without a C-toma to deal with. If it is a c-toma it will in the long run it will probably be the easiest of his difficulties to deal with. If it is, he will need surgery. And they will repeat in 6 months to a year (if they do a canal wall up procedure). They grow faster in younger children. Keep on top of getting it checked out - don't let them delay too much. If it is C-toma, try to get the surgery this summer so he can be mostly healed by the start of school (and to get the process going quicker). There is lot's of information in the bookmarks for this group. And we are all here to answer any questions you have. Good luck and God bless, Jane >From: " P. Binder " <pkbinder@...> >Reply-cholesteatoma ><cholesteatoma > >Subject: thank you >Date: Sun, 9 Jun 2002 15:10:32 -0400 > >Thanks for the replies. It's nice to know I can come here to chat b/c I >don't know of anyone else with this. I'm sure they live around me, I just >don't know who they are yet, lol!! My son is scheduled to see the ENT on >June 18. It's the earliest app;t open. I guess I wasn't sure about this >since he hasn't had the foul smelling drainage (at least I don't think he >has). What is interesting.....my son has always had a " foul " odor around >his head. I thought perhaps it was from his medications. I know of lots >of people who have this when they take psych. medications. But, now I'm >wondering if it's from his ears. My son told me today he has gotten so >used to his ears popping all the time that he thought it was normal. He's >the kind of kid who has had so many intense things happen that perhaps he >blew some of this off. Teenagers don't always tell everything, lol! I had >him read about this, and he tells me that alot of it is him, but not the >drainage. > >Can you have a pretty severe cholesteatoma w/o the drainage? Perhaps we >are catching this before it's to that point. Nevertheless, I can't wait to >find out what is going on. Another note, my son has always complained >about having " mental " issues, and why couldn't he be normal and have a > " medical " issue. Well, maybe this is it (although now he regrets making >that comment)!!! > >Thanks again. Pls forward any good websites or books when you find them. >I appreciate it!!! > >Pam _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 Hi Jane, Thanks for responding. This possible c-toma is just another thing to happen with my son. We have been thru so much over the years. My son has already been hospitalized five times for his bipolar and ADHD problems. Fortunately, he's not been readmitted for two years, and is pretty stable. He used to take 6 meds, but now is on only two. We are weaning him off the last psych med right now. Psych care here in Cinti is really, really bad. His wonderful doc of four years left the city to go elsewhere, and the new doc cancels us out every month. I'm really hoping some of this stuff is a result of the c-toma. Sounds strange, but it would be nice to have a "medical" explanation!! I'm a little nervous only b/c I'm looking for a new psych doctor. If surgery or meds to control the c-toma cause him to relapse, he would not be able to be readmitted. There are long waiting lists for beds. If it's medical, then he could get right in. He hasn't been complaining this week about his ears. He's on a strong dose of amoxicillin, so it must be helping some. However, he did tell me he got so used to his ears popping, and not being able to hear right, that he didn't give it any thought. Typical teenager!!! I hope your son does well this summer and transitions into the new school year. It's no fun having to deal with this stuff. Is your son on an IEP? My son couldn't be successful without his. He gets lots of interventions in school. Thanks again for your help!!! Pam thank you>Date: Sun, 9 Jun 2002 15:10:32 -0400>>Thanks for the replies. It's nice to know I can come here to chat b/c I >don't know of anyone else with this. I'm sure they live around me, I just >don't know who they are yet, lol!! My son is scheduled to see the ENT on >June 18. It's the earliest app;t open. I guess I wasn't sure about this >since he hasn't had the foul smelling drainage (at least I don't think he >has). What is interesting.....my son has always had a "foul" odor around >his head. I thought perhaps it was from his medications. I know of lots >of people who have this when they take psych. medications. But, now I'm >wondering if it's from his ears. My son told me today he has gotten so >used to his ears popping all the time that he thought it was normal. He's >the kind of kid who has had so many intense things happen that perhaps he >blew some of this off. Teenagers don't always tell everything, lol! I had >him read about this, and he tells me that alot of it is him, but not the >drainage.>>Can you have a pretty severe cholesteatoma w/o the drainage? Perhaps we >are catching this before it's to that point. Nevertheless, I can't wait to >find out what is going on. Another note, my son has always complained >about having "mental" issues, and why couldn't he be normal and have a >"medical" issue. Well, maybe this is it (although now he regrets making >that comment)!!!>>Thanks again. Pls forward any good websites or books when you find them. >I appreciate it!!!>>Pam_________________________________________________________________Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2002 Report Share Posted June 17, 2002 I go to to play spades. NEver heard of pogo. can one play spades there? MSN has good free games as well. shelley Sandy Booton <ibsandy77@...> wrote: DANA I NEVER THOUGHT THERE WOULD BE A DAY THAT I REALLY NEEDED MY GLASSES...BOY WAS I WRONG...LOL...JUST FOR THE HECK OF IT DO YOU PLAY ANY GAMES ON THE NET? FOR THAT MATTER DOES ANYONE OUT THERE PLAY AT POGO OR ANY OTHER GAME SITE..FREE THAT IS...I WONT PAY TO PLAY. I ALSO WANTED TO SAY THAT I GOT A LETTER FROM THE DOCTOR WHO INVENTED MICROHYDRIN AND IT ISNT AS GOOD AS ITS SUPPOSED TO BE....IT RAISED MY VIRAL LODE FROM JUST OVER A MILLION TO 1,650,000. NOT A GOOD THING. SO ITS SAFE TO SAY THAT IT DOESNT DO WHAT IT SAID IT WOULD DO. GLAD I ONLY SPENT $30 ON IT ONCE. I HOPE EVERYONE HAS A GREAT WEEK. LOVE IN HIS LIGHT SANDY --------------------------------- Quote Link to comment Share on other sites More sharing options...
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