Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Diane, and all: Glad to read your post. I wrote to Oprah - certified mail on March 8, 2008. Have not had a response yet. I agree with the thought that we need to write as a group. Hope more of you can write. Diane, I have never tried the baking soda mix, but have done some alternative meds. In my opinion, they work for a while, but your Dr. don't usually support it. I am now on revatio for PH. I see my Pulm. Dr. once a quarter or more if need to. Are you in New York City. I go to NY Prebs. on York Ave. and I think they are attentive. But you have to go in with your list. Also have your Pulm Dr. talk to your primary Doc and your other specialists. Hope you feel better. I think I will have to be rolled out of the house soon. I'm gaining so much weight from the pred. Are you on that? Take care of yourself as best you can and pray, pray, pray. God is there for us! Peace & Blessings Wilma NYC pf Oct 05 ra - not sure maybe the cause of the pf **************Make your life easier with all your friends, email, and favorite sites in one place. Try it now. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Diane, and all: Glad to read your post. I wrote to Oprah - certified mail on March 8, 2008. Have not had a response yet. I agree with the thought that we need to write as a group. Hope more of you can write. Diane, I have never tried the baking soda mix, but have done some alternative meds. In my opinion, they work for a while, but your Dr. don't usually support it. I am now on revatio for PH. I see my Pulm. Dr. once a quarter or more if need to. Are you in New York City. I go to NY Prebs. on York Ave. and I think they are attentive. But you have to go in with your list. Also have your Pulm Dr. talk to your primary Doc and your other specialists. Hope you feel better. I think I will have to be rolled out of the house soon. I'm gaining so much weight from the pred. Are you on that? Take care of yourself as best you can and pray, pray, pray. God is there for us! Peace & Blessings Wilma NYC pf Oct 05 ra - not sure maybe the cause of the pf **************Make your life easier with all your friends, email, and favorite sites in one place. Try it now. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 I agree and have just written a letter to Oprah also! Such a good idea that we all be heard. Our voices may be weak but if we all stick together in good determination maybe we can get somewhere on this avenue! Beth is is right about making noisw to get heard. We need research and clinical trials just like every other awful disease around this world! Just let me know if I can do anything else online to help. I am so weak now and going thru rough times at this point but willing to do what I can to help support the group. I have only had (for the record) 2 -6min walks and about 4 PFT's in the 2 1/2yrs diagnosed. Probably because I became so sick so fast , can't take most meds and the docs don't know what the heck to do with me. Oh This is for P- re:the Polymyositis-you have had this since 1998 and what kinds of meds have worked for you? Has exercise helped and is there any hints on diet or anything natural you can give me to help myself? I have also just recently been diagnosed with PH since June-they are not treating because it is a secondary diagnosis. So being untreated won't this get worse? Is exercise good or bad for this??? The docs here do not give me any answers at all except just take one day at a time-you are getting worse because you have allergies to many meds and we can't offer you anything else. I want to help myself as much as I can. I try to eat healthy-cholesterol was 144. I eat cherries to help with anti inflammatory things in my body and try to stay away from carbs all the time. I heard if you take baking soda and organic vinegar 3xd with warm water this helps to oxygenate the lungs but I have tried it just 2 or 3 times and can't get past the taste! Tastes like warm beer-yuk. Have you heard of this before? Any input would be helpful and I would appreciate it-thanks for listening! Diane PF,PM, sjorgrens and Raynauds since 2006 NY Quote Link to comment Share on other sites More sharing options...
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