Guest guest Posted December 12, 2009 Report Share Posted December 12, 2009 My memory has been worse than ever since starting prednisone. I'm not sure if the prednisone is causing it or if, like Bob, I just have worsening CRS. A friend who was having memory issues pointed me in the direction of CO Q10. She had heard and read that statins (which I take high doses of, for 30+ years)can cause memory loss. She believes that her memory has improved significantly since taking CO Q10. My question is... have forum members taken CO Q10, and if so what would you say about it? B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2009 Report Share Posted December 12, 2009 Barbara I'd encourage you to read Mayo's information on CoQ10. http://www.mayoclinic.com/health/coenzyme-q10/NS_patient-coenzymeq10 The safety section certainly points out some issues that could be of concern to us. I don't know what other meds you are on or anything else but I would certainly want doctor's approval before taking it (or most any supplement). Issues of blood sugar, thyroid levels, and exercise would seem the most significant to most PF'ers. > > My memory has been worse than ever since starting prednisone. I'm not sure if the prednisone is causing it or if, like Bob, I just have worsening CRS. A friend who was having memory issues pointed me in the direction of CO Q10. She had heard and read that statins (which I take high doses of, for 30+ years)can cause memory loss. She believes that her memory has improved significantly since taking CO Q10. > > My question is... have forum members taken CO Q10, and if so what would you say about it? > > B > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2009 Report Share Posted December 12, 2009 Thanks Bruce. It was interesting. I'll be seeing my Emory pulmodude on 12/23 - I will ask him his thoughts. B Barbara McD PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever Beautiful Western NC Attitude is everything. To: Breathe-Support Sent: Sat, December 12, 2009 1:36:38 PMSubject: Re: CO Q10 BarbaraI'd encourage you to read Mayo's information on CoQ10.http://www.mayoclinic.com/health/coenzyme-q10/NS_patient-coenzymeq10The safety section certainly points out some issues that could be ofconcern to us. I don't know what other meds you are on or anything elsebut I would certainly want doctor's approval before taking it (or mostany supplement). Issues of blood sugar, thyroid levels, and exercisewould seem the most significant to most PF'ers.>> My memory has been worse than ever since starting prednisone. I'm notsure if the prednisone is causing it or if, like Bob, I just haveworsening CRS. A friend who was having memory issues pointed me in thedirection of CO Q10. She had heard and read that statins (which I takehigh doses of, for 30+ years)can cause memory loss. She believes thather memory has improved significantly since taking CO Q10.>> My question is... have forum members taken CO Q10, and if so whatwould you say about it?>> B> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2009 Report Share Posted December 12, 2009 Barbara, Let me tell you my experience with COQ10. Five years ago I had an echo and was told my valve leakage had worsened and I needed heart surgery. Blessedly (is that a word), I was referred to a cardiologist who is a world leader researcher in COQ10. He told me my leakage was worse but did not constitute a need for heart surgery. He started me on COQ10. Last year after my echo he told me I had no worse than anyone my age. (most peope don't have echo and do not know they have a little leakage) My the way, this is the doctor that had the tests ran that led to my Pf diagnosis. Unfortunately, my internist did not even call me and tell me my night O2 was in the 70s. Sorry I can't speak to the memory aspect, but I am a believer in COQ2. From: Barbara McD bamny@... sats weTo: Breathe-Support@yt speaahoogroups.comSent: Sat, December 12, 2009 12:00:58 PMSubject: CO Q10 My memory has been worse than ever since starting prednisone. I'm not sure if the prednisone is causing it or if, like Bob, I just have worsening CRS. A friend who was having memory issues pointed me in the direction of CO Q10. She had heard and read that statins (which I take high doses of, for 30+ years)can cause memory loss. She believes that her memory has improved significantly since taking CO Q10. My question is... have forum members taken CO Q10, and if so what would you say about it?B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2009 Report Share Posted December 12, 2009 Gale: In the little bit of research I did read, COQ10 was sometimes prescribed for heart-related illnesses--with good effect. Glad that it worked for you in that respect. By any chance, have you noticed any difference in your memory since you started taking it? B Barbara McD PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever Beautiful Western NC Attitude is everything. To: Breathe-Support Sent: Sat, December 12, 2009 4:12:33 PMSubject: Re: CO Q10 Barbara, Let me tell you my experience with COQ10. Five years ago I had an echo and was told my valve leakage had worsened and I needed heart surgery. Blessedly (is that a word), I was referred to a cardiologist who is a world leader researcher in COQ10. He told me my leakage was worse but did not constitute a need for heart surgery. He started me on COQ10. Last year after my echo he told me I had no worse than anyone my age. (most peope don't have echo and do not know they have a little leakage) My the way, this is the doctor that had the tests ran that led to my Pf diagnosis. Unfortunately, my internist did not even call me and tell me my night O2 was in the 70s. Sorry I can't speak to the memory aspect, but I am a believer in COQ2. From: Barbara McD bamny (AT) yahoo (DOT) com sats weTo: Breathe-Support@ yt speaahoogroups. comSent: Sat, December 12, 2009 12:00:58 PMSubject: CO Q10 My memory has been worse than ever since starting prednisone. I'm not sure if the prednisone is causing it or if, like Bob, I just have worsening CRS. A friend who was having memory issues pointed me in the direction of CO Q10. She had heard and read that statins (which I take high doses of, for 30+ years)can cause memory loss. She believes that her memory has improved significantly since taking CO Q10. My question is... have forum members taken CO Q10, and if so what would you say about it?B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2009 Report Share Posted December 12, 2009 Barbara, I have been taking 200mg CoQ10 with the OK of my Pulmodude and by the suggestion of my Chiropractor for 3 years. They agreed that it might help with muscle mass and strength. . I have had no problems with it. I get mine from Puritan Pride. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Barbara McD wrote: My memory has been worse than ever since starting prednisone. I'm not sure if the prednisone is causing it or if, like Bob, I just have worsening CRS. A friend who was having memory issues pointed me in the direction of CO Q10. She had heard and read that statins (which I take high doses of, for 30+ years)can cause memory loss. She believes that her memory has improved significantly since taking CO Q10. My question is... have forum members taken CO Q10, and if so what would you say about it? B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2009 Report Share Posted December 13, 2009 , It is true that the restrictions appear to have been dropped. My own 74 year old parents were able to get their H1N1 shots this week. I'm not at all clear on what you mean when you say this puts "many folks at higher risk". The more people who choose to be vaccinated the better off we all are in my opinion. And yes the vaccine manufacturers will (or probably have already) be paid for the vaccine they made and delivered. If I buy a gallon of milk and only use 3/4's of it, the market where I purchased it doesn't have to refund part of my money right? I realize you see this situation differently than I do but the main thing is I hope you have gotten your vaccines if you want them and you stay healthy through the flu season. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sat, December 12, 2009 10:48:48 PMSubject: Re: Re: CO Q10 For Beth: My son tells me that swine flu shots are now available to all that wants one. Crazy! This puts many folks at a higher risk. First we could not make enough and now we can not sell what we made. I bet the Swiss drug company will be paid for all we ordered--delivered or not. Burns From: Bruce <brucemoreland@ gmail.com>Subject: Re: CO Q10To: Breathe-Support@ yahoogroups. comDate: Saturday, December 12, 2009, 1:36 PM BarbaraI'd encourage you to read Mayo's information on CoQ10.http://www.mayoclinic.com/health/coenzyme-q10/NS_patient-coenzymeq10The safety section certainly points out some issues that could be ofconcern to us. I don't know what other meds you are on or anything elsebut I would certainly want doctor's approval before taking it (or mostany supplement). Issues of blood sugar, thyroid levels, and exercisewould seem the most significant to most PF'ers.>> My memory has been worse than ever since starting prednisone. I'm notsure if the prednisone is causing it or if, like Bob, I just haveworsening CRS. A friend who was having memory issues pointed me in thedirection of CO Q10. She had heard and read that statins (which I takehigh doses of, for 30+ years)can cause memory loss. She believes thather memory has improved significantly since taking CO Q10.>> My question is... have forum members taken CO Q10, and if so whatwould you say about it?>> B> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2009 Report Share Posted December 13, 2009 we call it OD -- oxygen deprivation LOL Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: CO Q10To: Breathe-Support Date: Saturday, December 12, 2009, 10:06 PM Barbara- does PF affect Short term memory? If so I just have thought I was stupid or getting altzhiemer's. ; Joyce R AZ birds In a message dated 12/12/2009 4:38:32 P.M. US Mountain Standard Time, gale.more (AT) yahoo (DOT) com writes: Barbara I really can't tell because I have two dieases that affect short term memory. Sleep apnea and PF. COQ2 can't make up for lack of oxgyen. Maybe someone else can shed some light however we all have PF. Gale From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, December 12, 2009 3:22:00 PMSubject: Re: CO Q10 Gale: In the little bit of research I did read, COQ10 was sometimes prescribed for heart-related illnesses--with good effect. Glad that it worked for you in that respect. By any chance, have you noticed any difference in your memory since you started taking it? B Barbara McD PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever Beautiful Western NC Attitude is everything. From: Gale More <gale.more (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, December 12, 2009 4:12:33 PMSubject: Re: CO Q10 Barbara, Let me tell you my experience with COQ10. Five years ago I had an echo and was told my valve leakage had worsened and I needed heart surgery. Blessedly (is that a word), I was referred to a cardiologist who is a world leader researcher in COQ10. He told me my leakage was worse but did not constitute a need for heart surgery. He started me on COQ10. Last year after my echo he told me I had no worse than anyone my age. (most peope don't have echo and do not know they have a little leakage) My the way, this is the doctor that had the tests ran that led to my Pf diagnosis. Unfortunately, my internist did not even call me and tell me my night O2 was in the 70s. Sorry I can't speak to the memory aspect, but I am a believer in COQ2. From: Barbara McD bamny (AT) yahoo (DOT) com sats weTo: Breathe-Support@ yt speaahoogroups. comSent: Sat, December 12, 2009 12:00:58 PMSubject: CO Q10 My memory has been worse than ever since starting prednisone. I'm not sure if the prednisone is causing it or if, like Bob, I just have worsening CRS. A friend who was having memory issues pointed me in the direction of CO Q10. She had heard and read that statins (which I take high doses of, for 30+ years)can cause memory loss. She believes that her memory has improved significantly since taking CO Q10. My question is... have forum members taken CO Q10, and if so what would you say about it?B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2009 Report Share Posted December 13, 2009 john i wish the h1n1 shots were available where i live Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: CO Q10To: Breathe-Support Date: Saturday, December 12, 2009, 10:48 PM For Beth: My son tells me that swine flu shots are now available to all that wants one. Crazy! This puts many folks at a higher risk. First we could not make enough and now we can not sell what we made. I bet the Swiss drug company will be paid for all we ordered--delivered or not. Burns From: Bruce <brucemoreland@ gmail.com>Subject: Re: CO Q10To: Breathe-Support@ yahoogroups. comDate: Saturday, December 12, 2009, 1:36 PM BarbaraI'd encourage you to read Mayo's information on CoQ10.http://www.mayoclin ic.com/health/ coenzyme- q10/NS_patient- coenzymeq10The safety section certainly points out some issues that could be ofconcern to us. I don't know what other meds you are on or anything elsebut I would certainly want doctor's approval before taking it (or mostany supplement). Issues of blood sugar, thyroid levels, and exercisewould seem the most significant to most PF'ers.>> My memory has been worse than ever since starting prednisone. I'm notsure if the prednisone is causing it or if, like Bob, I just haveworsening CRS. A friend who was having memory issues pointed me in thedirection of CO Q10. She had heard and read that statins (which I takehigh doses of, for 30+ years)can cause memory loss. She believes thather memory has improved significantly since taking CO Q10.>> My question is... have forum members taken CO Q10, and if so whatwould you say about it?>> B> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2009 Report Share Posted December 13, 2009 Joyce, Call the Bucks Co. Health Dept...Montco is giving them with no restrictions! My doc doesn't have any but the county is giving shots at the Community college on Thursday! Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara     “I’m gonna be iron like a lion in Zionâ€Â Bob Marley Vinca Minor-periwinkle is my flower   Joyce T Rosenberg wrote:  john i wish the h1n1 shots were available where i live Pink Joyce R (IPF 3/06)  IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org From: Bruce <brucemoreland@ gmail.com> Subject: Re: CO Q10 To: Breathe-Support@ yahoogroups. com Date: Saturday, December 12, 2009, 1:36 PM  Barbara I'd encourage you to read Mayo's information on CoQ10. http://www.mayoclin ic.com/health/ coenzyme- q10/NS_patient- coenzymeq10 The safety section certainly points out some issues that could be of concern to us. I don't know what other meds you are on or anything else but I would certainly want doctor's approval before taking it (or most any supplement). Issues of blood sugar, thyroid levels, and exercise would seem the most significant to most PF'ers. > > My memory has been worse than ever since starting prednisone. I'm not sure if the prednisone is causing it or if, like Bob, I just have worsening CRS. A friend who was having memory issues pointed me in the direction of CO Q10. She had heard and read that statins (which I take high doses of, for 30+ years)can cause memory loss. She believes that her memory has improved significantly since taking CO Q10. > > My question is... have forum members taken CO Q10, and if so what would you say about it? > > B > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2009 Report Share Posted December 13, 2009 I am trying to say what you said. If swine flu is a problem to many--I wish our system could communicate the need to the many. I know that I am considered a to be a cynic--However, I really do want to understand the Human Condition and sometimes that takes poking for the overlooked-harsh truth. I think shots should be made in the USA and our media should do some serious education about many issues. Burns From: Bruce <brucemoreland@ gmail.com>Subject: Re: CO Q10To: Breathe-Support@ yahoogroups. comDate: Saturday, December 12, 2009, 1:36 PM BarbaraI'd encourage you to read Mayo's information on CoQ10.http://www.mayoclin ic.com/health/ coenzyme- q10/NS_patient- coenzymeq10The safety section certainly points out some issues that could be ofconcern to us. I don't know what other meds you are on or anything elsebut I would certainly want doctor's approval before taking it (or mostany supplement). Issues of blood sugar, thyroid levels, and exercisewould seem the most significant to most PF'ers.>> My memory has been worse than ever since starting prednisone. I'm notsure if the prednisone is causing it or if, like Bob, I just haveworsening CRS. A friend who was having memory issues pointed me in thedirection of CO Q10. She had heard and read that statins (which I takehigh doses of, for 30+ years)can cause memory loss. She believes thather memory has improved significantly since taking CO Q10.>> My question is... have forum members taken CO Q10, and if so whatwould you say about it?>> B> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2009 Report Share Posted December 13, 2009 Please read my answer to Beth. I have visited over sixty countries and territory's. I have used so-called Socialized Medicine Centers in some of these places. I am happy to be able to use the VA and until their recent price changes, I felt the VA was super. I could not cope with IPF if I did not have ample funds to pay for help. I really do want to know how the folks without funds are making it. Burns Subject: Re: CO Q10To: Breathe-Support Date: Saturday, December 12, 2009, 10:59 PM This is the way it is with all flu vaccines. A large percentage of thepopulation chooses not to get vaccinated. They choose so for manyreasons ranging from lack of interest to lack of concern based on theirpersonal health to false information about the vaccines spread throughthe internet and gossip. We are just really entering the regular fluseason. We don't know how long H1N1 will be active.> >> > My memory has been worse than ever since starting prednisone. I'mnot> sure if the prednisone is causing it or if, like Bob, I just have> worsening CRS. A friend who was having memory issues pointed me in the> direction of CO Q10. She had heard and read that statins (which I take> high doses of, for 30+ years)can cause memory loss. She believes that> her memory has improved significantly since taking CO Q10.> >> > My question is... have forum members taken CO Q10, and if so what> would you say about it?> >> > B> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2009 Report Share Posted December 13, 2009 That's ridiculous. I live near a state line and my doctor is in the other state. She still gave me my shot.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho From: Bruce <brucemoreland@ gmail.com>Subject: Re: CO Q10To: Breathe-Support@ yahoogroups. comDate: Sunday, December 13, 2009, 1:48 PM PinkSince more is becoming available, you might make a couple of calls.Walgreens in Pennsauken, NJ is suppose to have it. Also here is a listof health centers in Philadelphia although I don't know if you actuallylive in Philadelphia city limits.http://www.phila. gov/health/ H1N1/h1n1fluclin ics.htmlFor anyone still having trouble finding them, I'd recommend checkinghere as well:http://www.passport healthusa. comPassport Health does nothing but vaccines and they were the first in mycounty to get large quantities. That's where I got mine. The best parttoo is they schedule appointments and you don't have to be around anysick people.> >> > My memory has been worse than ever since starting prednisone. I'mnot> sure if the prednisone is causing it or if, like Bob, I just have> worsening CRS. A friend who was having memory issues pointed me in the> direction of CO Q10. She had heard and read that statins (which I take> high doses of, for 30+ years)can cause memory loss. She believes that> her memory has improved significantly since taking CO Q10.> >> > My question is... have forum members taken CO Q10, and if so what> would you say about it?> >> > B> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Bruce there are a few places where the h1n1 is being given in bucks county -- in high schools i was going to go yesterday but walked the dog prior to leaving for a high school -- about a 30 minute drive with no traffic got a coughing spell -- took 15 to 30 minutes to settle down and decided not to make the trip have been staying home since i got back from er on sunday -- except i walked the dog once fortunately he is paper trained now i wonder if it would be safe to get the vaccine while sick Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: CO Q10To: Breathe-Support Date: Sunday, December 13, 2009, 1:48 PM PinkSince more is becoming available, you might make a couple of calls.Walgreens in Pennsauken, NJ is suppose to have it. Also here is a listof health centers in Philadelphia although I don't know if you actuallylive in Philadelphia city limits.http://www.phila. gov/health/ H1N1/h1n1fluclin ics.htmlFor anyone still having trouble finding them, I'd recommend checkinghere as well:http://www.passport healthusa. comPassport Health does nothing but vaccines and they were the first in mycounty to get large quantities. That's where I got mine. The best parttoo is they schedule appointments and you don't have to be around anysick people.> >> > My memory has been worse than ever since starting prednisone. I'mnot> sure if the prednisone is causing it or if, like Bob, I just have> worsening CRS. A friend who was having memory issues pointed me in the> direction of CO Q10. She had heard and read that statins (which I take> high doses of, for 30+ years)can cause memory loss. She believes that> her memory has improved significantly since taking CO Q10.> >> > My question is... have forum members taken CO Q10, and if so what> would you say about it?> >> > B> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Joyce, The safest thing is not to get any vaccine while you are sick. Wait until you are well and then get it. If you're already sick you shouldn't burden your body with a vaccine. It's possible (though not likely) you could end up sicker than you are now. Best to wait! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Tue, December 15, 2009 7:17:34 PMSubject: Re: Re: CO Q10 Bruce there are a few places where the h1n1 is being given in bucks county -- in high schools i was going to go yesterday but walked the dog prior to leaving for a high school -- about a 30 minute drive with no traffic got a coughing spell -- took 15 to 30 minutes to settle down and decided not to make the trip have been staying home since i got back from er on sunday -- except i walked the dog once fortunately he is paper trained now i wonder if it would be safe to get the vaccine while sick Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Bruce <brucemoreland@ gmail.com>Subject: Re: CO Q10To: Breathe-Support@ yahoogroups. comDate: Sunday, December 13, 2009, 1:48 PM PinkSince more is becoming available, you might make a couple of calls.Walgreens in Pennsauken, NJ is suppose to have it. Also here is a listof health centers in Philadelphia although I don't know if you actuallylive in Philadelphia city limits.http://www.phila. gov/health/ H1N1/h1n1fluclin ics.htmlFor anyone still having trouble finding them, I'd recommend checkinghere as well:http://www.passport healthusa. comPassport Health does nothing but vaccines and they were the first in mycounty to get large quantities. That's where I got mine. The best parttoo is they schedule appointments and you don't have to be around anysick people.> >> > My memory has been worse than ever since starting prednisone. I'mnot> sure if the prednisone is causing it or if, like Bob, I just have> worsening CRS. A friend who was having memory issues pointed me in the> direction of CO Q10. She had heard and read that statins (which I take> high doses of, for 30+ years)can cause memory loss. She believes that> her memory has improved significantly since taking CO Q10.> >> > My question is... have forum members taken CO Q10, and if so what> would you say about it?> >> > B> >> Quote Link to comment Share on other sites More sharing options...
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