Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Cathy, Typical dose is 70-210 milligrams of capsules containing the active ingredient of MT--silymarin 3x daily, or 1/4 to 1tsp of MT tincture 3x daily. (THE HERBAL DRUGSTORE- BY White MD.) You cannot overdose== and there are no drug interactions. Health Food Stores are a good place to find it. For the " inside " the bone pain--- use MSM Powder-- I get mine thru PUREMSM.COM. Since I started using it, I have not needed my pain meds. As for the heart-- I've been having more chest and left arm pain, and was fighting extreme (way over normal extreme for us) fatigue when I'd try to do anything-- even to walk across a parking lot to go do the grocery shopping. I have Stage 4 Pulm Sarc-- and it's only been since I got on the Remicade that I was able to go without O2 for the last 18 months. But this winter has brought back this problem-- so I'm sure that next week they'll put me back on the O2. We found it when they did an echocardiogram-- and it showed moderate pulm hypertension. This week on Thurs I do a cardiolyte stress test and nuclear scan-- to see if we can get a better idea of what is happening-- and I suspect they'll want to do a right heart cath to see exactly what the pressures are. The Rheumi in Sac did tell me there are plenty of new meds to treat PH-- and that they are working well-- so I'm hopeful we can get the progression stopped. In the meantime-- no aerobics! My heartrate resting is already at 90-- so I hit my acceptable high in a couple of minutes -- and they only let me get up to 105 beats per minute--- Actually, even before the chest pain incident-- I had a EEG-- brain wave study, and they thought that it showed a " Right Bundle Branch Block. " The docs blew it off-- -until you go into total failure- it's not a problem-- But with cardiac sarc-- a study in China showed that out of 93 patients that died of sarc complications-- 76 of them had undiagnosed RBBB. Hmmm, they catch alot of patients over there with cardiac sarc-- the good old USA is once again hiding from the eight ball... Sincerely, Tracie NS Co-owner/moderator --- Cathy Borden wrote: > Tracie, > Thank you so much! How much of the Milk Thistle > Capsules should I take? Do you get them at a health > food store? That's really good to know that the sq > methotrexate bypasses the liver. Last time I was in > the hospital my heart rate would drop down to 40 at > night, even if I was awake. They said that could > suggest heart involvement with sarcoid. They did an > echo and didn't see any nodules. My EF was only 53% > though. How did you know it got to your heart? What > symptoms did you have? > Thanks so much! > Cathy > > tracie feldhaus wrote: > Cathy, Welcome to the group I'm wish > you didn't need to learn about this disease. ... > I see where they have started you on > Plaquenil--this is good. I know it helped me with > the brain fog part, and the systemic body pain. It > also helps with my lung sarc. > It's interesting about the Alpha 1 trypshin or > whatever it's called. The post I sent on to the > group from the Arthritis Foundation addresses that > issue in asthma patients. > Methotrexate can be given by injection - Subq. It > totally bypasses the liver that way, and still works > well. Also-- whenever liver health is an issue---GET > YOURSELF ON MILK THISTLE CAPSULES! It is a natural > liver detox, and works wonders. I found out about > it a few years ago from a friend that had had > childhood Hodgkins Lymphoma back in the 60's. She > was one of the first 8 kids that got radiation and > they used such high doses-- that even tho the > Hodgkins was cured-- the secondary scarring of her > organs, heart liver lungs esophagus, stomach-- > generally killed all these kids as young adults. At > the age of 49-- she was the oldest survivor of > Hodgkins from that era. > She ended up developing such scarring around the > peri-cardial sac around her heart-- that they had to > remove it when she was 46. The docs at Stanford > told her 2 days, 2 weeks, 2 months-- tops. She > lived another 3 yrs. > Her liver was in serious shape, and had developed > cancer-- her oncologist got her on Milk Thistle, and > when she died, her liver was in wonderful > condition-- the cancer had gone to her bones... He > did tell her that cirrhosis and liver cancer along > with Hepatitis all respond well to Milk Thistle. I > know that I use it and even on MTX, Plaquenil and > Remicade-- my liver enzymes are all normal now! > You asked if this is a slow progression-- fatigue, > brain fog, extremity weakness-- it seems to progress > that way in many of us. What I have noticed since I > started on the Remicade over 15 months ago is that > my bone pain, the joint and ligament pain, the brain > fog-- are all much better. I have started having > problems with my lungs and heart lately- and am > developing more pulmonary fibrosis with pulmonary > hypertension-- so it isn't stopping that part. I > don't know what the answer is -- and after living > with this for the last 17 yrs--- I'm not frantically > searching -- > The exhaustion is worse-- but I suspect it's the > PPH more than the sarc. (Actually it's Secondary > Pulm Hypertension._ > One thing that is becoming apparent in the studies > is that somehow we came into contact with a virus or > bacterial infection that turned on our immune > system, and now our bodies can't clear out the TNF-b > cells (we produce too many) and they build on the > other immune cells forming the granulomas. This is > why they are looking at TNF-B blockers-- the > " Biologicals " BRM's. Biological Response > Modifiers. > Here is a great site to check out for explanation > of the DMARDS and BRMS--www.arthritis.org. > Use a 2007 or 2006 Prescription drug issue and you > will be amazed at the choices we have. > > I do hope this helps, > Sincerely, > Tracie > NSCo-owner/moderator > > Re: NS dx > > Thank you so much for your reply. I have had > neuro symptoms for a year now and it seems like over > all my condition declines, but it's like a roller > coaster, some days I feel like I am getting better > (like when I start prednisone again---I hate > prednisone though) and then I am back to bad or > worse. Is that the way it goes? Just a downward > progressive spiral? I am a nurse to. I never dreamed > I would end up with something like this. I read it > hits healthcare workers frequently. I am weaning off > of prednisone again,so I feel rotten. The Plaquenil > is helping with the pain, but the fatigue is > horrible. The weakness and numbness seem to keep > getting worse. They are hesitant to use methotrexate > because they also found I have a liver disease that > I never heard of before (Alpha 1 anti trypsin > deficiency-sp? ) that means my liver's not producing > the protien needed in my lungs that protect against > an immune response (great thing to have in > combination with sarcoid huh?). Anyway, I > guess the liver makes the protien the wrong shape > and it clogs up the liver, because it can't leave > the liver and leaves your lungs unprotected, > predisposed to severe emphysema at an early age. I > just rec'd that dx, so have a lot to learn about it. > thanks for your time and info! It is so great to > finally have someone to talk to who understands. > Thanks so much!!!!!! > > Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I > was dx with Sarcoid almost 13 years ago, NS 5 years > ago, I have had just about all your symptoms, right > now I am just slowly losing the use of my left side > and legs, On Plaquanil, Methotrexate, and many other > drugs to treat symptoms, this week I have a hearing > with the insurance company to appeal their denial on > Remicade which is the drug I know need. I left my > job as an RN, Labor and delivery nurse almost 5 > years ago, hardly seems possible, I keep my self > busy with an in home small business or I would go > crazy, or maybe already there. > There are many of us here that have been through all > this, and much more, this is a wonderful supportive > group, with very knowledgeable moderators and we are > blessed to have them. Many of them are sick right > now, but still check in when they can. you have > found a good home here, I hope you find your answers > here, and the support you need. Ask away, and whine > when needed, we all do. > God Bless you, Marla > > -- > > > > > > --------------------------------- > Be a better friend, newshound, and know-it-all > with Yahoo! Mobile. Try it now. > > > > > > > > > > > --------------------------------- > Looking for last minute shopping deals? Find them > fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Cathy, Typical dose is 70-210 milligrams of capsules containing the active ingredient of MT--silymarin 3x daily, or 1/4 to 1tsp of MT tincture 3x daily. (THE HERBAL DRUGSTORE- BY White MD.) You cannot overdose== and there are no drug interactions. Health Food Stores are a good place to find it. For the " inside " the bone pain--- use MSM Powder-- I get mine thru PUREMSM.COM. Since I started using it, I have not needed my pain meds. As for the heart-- I've been having more chest and left arm pain, and was fighting extreme (way over normal extreme for us) fatigue when I'd try to do anything-- even to walk across a parking lot to go do the grocery shopping. I have Stage 4 Pulm Sarc-- and it's only been since I got on the Remicade that I was able to go without O2 for the last 18 months. But this winter has brought back this problem-- so I'm sure that next week they'll put me back on the O2. We found it when they did an echocardiogram-- and it showed moderate pulm hypertension. This week on Thurs I do a cardiolyte stress test and nuclear scan-- to see if we can get a better idea of what is happening-- and I suspect they'll want to do a right heart cath to see exactly what the pressures are. The Rheumi in Sac did tell me there are plenty of new meds to treat PH-- and that they are working well-- so I'm hopeful we can get the progression stopped. In the meantime-- no aerobics! My heartrate resting is already at 90-- so I hit my acceptable high in a couple of minutes -- and they only let me get up to 105 beats per minute--- Actually, even before the chest pain incident-- I had a EEG-- brain wave study, and they thought that it showed a " Right Bundle Branch Block. " The docs blew it off-- -until you go into total failure- it's not a problem-- But with cardiac sarc-- a study in China showed that out of 93 patients that died of sarc complications-- 76 of them had undiagnosed RBBB. Hmmm, they catch alot of patients over there with cardiac sarc-- the good old USA is once again hiding from the eight ball... Sincerely, Tracie NS Co-owner/moderator --- Cathy Borden wrote: > Tracie, > Thank you so much! How much of the Milk Thistle > Capsules should I take? Do you get them at a health > food store? That's really good to know that the sq > methotrexate bypasses the liver. Last time I was in > the hospital my heart rate would drop down to 40 at > night, even if I was awake. They said that could > suggest heart involvement with sarcoid. They did an > echo and didn't see any nodules. My EF was only 53% > though. How did you know it got to your heart? What > symptoms did you have? > Thanks so much! > Cathy > > tracie feldhaus wrote: > Cathy, Welcome to the group I'm wish > you didn't need to learn about this disease. ... > I see where they have started you on > Plaquenil--this is good. I know it helped me with > the brain fog part, and the systemic body pain. It > also helps with my lung sarc. > It's interesting about the Alpha 1 trypshin or > whatever it's called. The post I sent on to the > group from the Arthritis Foundation addresses that > issue in asthma patients. > Methotrexate can be given by injection - Subq. It > totally bypasses the liver that way, and still works > well. Also-- whenever liver health is an issue---GET > YOURSELF ON MILK THISTLE CAPSULES! It is a natural > liver detox, and works wonders. I found out about > it a few years ago from a friend that had had > childhood Hodgkins Lymphoma back in the 60's. She > was one of the first 8 kids that got radiation and > they used such high doses-- that even tho the > Hodgkins was cured-- the secondary scarring of her > organs, heart liver lungs esophagus, stomach-- > generally killed all these kids as young adults. At > the age of 49-- she was the oldest survivor of > Hodgkins from that era. > She ended up developing such scarring around the > peri-cardial sac around her heart-- that they had to > remove it when she was 46. The docs at Stanford > told her 2 days, 2 weeks, 2 months-- tops. She > lived another 3 yrs. > Her liver was in serious shape, and had developed > cancer-- her oncologist got her on Milk Thistle, and > when she died, her liver was in wonderful > condition-- the cancer had gone to her bones... He > did tell her that cirrhosis and liver cancer along > with Hepatitis all respond well to Milk Thistle. I > know that I use it and even on MTX, Plaquenil and > Remicade-- my liver enzymes are all normal now! > You asked if this is a slow progression-- fatigue, > brain fog, extremity weakness-- it seems to progress > that way in many of us. What I have noticed since I > started on the Remicade over 15 months ago is that > my bone pain, the joint and ligament pain, the brain > fog-- are all much better. I have started having > problems with my lungs and heart lately- and am > developing more pulmonary fibrosis with pulmonary > hypertension-- so it isn't stopping that part. I > don't know what the answer is -- and after living > with this for the last 17 yrs--- I'm not frantically > searching -- > The exhaustion is worse-- but I suspect it's the > PPH more than the sarc. (Actually it's Secondary > Pulm Hypertension._ > One thing that is becoming apparent in the studies > is that somehow we came into contact with a virus or > bacterial infection that turned on our immune > system, and now our bodies can't clear out the TNF-b > cells (we produce too many) and they build on the > other immune cells forming the granulomas. This is > why they are looking at TNF-B blockers-- the > " Biologicals " BRM's. Biological Response > Modifiers. > Here is a great site to check out for explanation > of the DMARDS and BRMS--www.arthritis.org. > Use a 2007 or 2006 Prescription drug issue and you > will be amazed at the choices we have. > > I do hope this helps, > Sincerely, > Tracie > NSCo-owner/moderator > > Re: NS dx > > Thank you so much for your reply. I have had > neuro symptoms for a year now and it seems like over > all my condition declines, but it's like a roller > coaster, some days I feel like I am getting better > (like when I start prednisone again---I hate > prednisone though) and then I am back to bad or > worse. Is that the way it goes? Just a downward > progressive spiral? I am a nurse to. I never dreamed > I would end up with something like this. I read it > hits healthcare workers frequently. I am weaning off > of prednisone again,so I feel rotten. The Plaquenil > is helping with the pain, but the fatigue is > horrible. The weakness and numbness seem to keep > getting worse. They are hesitant to use methotrexate > because they also found I have a liver disease that > I never heard of before (Alpha 1 anti trypsin > deficiency-sp? ) that means my liver's not producing > the protien needed in my lungs that protect against > an immune response (great thing to have in > combination with sarcoid huh?). Anyway, I > guess the liver makes the protien the wrong shape > and it clogs up the liver, because it can't leave > the liver and leaves your lungs unprotected, > predisposed to severe emphysema at an early age. I > just rec'd that dx, so have a lot to learn about it. > thanks for your time and info! It is so great to > finally have someone to talk to who understands. > Thanks so much!!!!!! > > Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I > was dx with Sarcoid almost 13 years ago, NS 5 years > ago, I have had just about all your symptoms, right > now I am just slowly losing the use of my left side > and legs, On Plaquanil, Methotrexate, and many other > drugs to treat symptoms, this week I have a hearing > with the insurance company to appeal their denial on > Remicade which is the drug I know need. I left my > job as an RN, Labor and delivery nurse almost 5 > years ago, hardly seems possible, I keep my self > busy with an in home small business or I would go > crazy, or maybe already there. > There are many of us here that have been through all > this, and much more, this is a wonderful supportive > group, with very knowledgeable moderators and we are > blessed to have them. Many of them are sick right > now, but still check in when they can. you have > found a good home here, I hope you find your answers > here, and the support you need. Ask away, and whine > when needed, we all do. > God Bless you, Marla > > -- > > > > > > --------------------------------- > Be a better friend, newshound, and know-it-all > with Yahoo! Mobile. Try it now. > > > > > > > > > > > --------------------------------- > Looking for last minute shopping deals? Find them > fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Thanks Tracie, We are going to go get some Friday (payday). What is MSM? I have heard other people talk about it. I ask about the heart thing also because a few years ago (before I knew I had sarcoidosis in my lungs--they just said I kept having recurring pneumonia for about 4 years for an unknown reason) I had severe chest pain and left arm pain and it appeared I was having a heart attack. The squad and the ER thought I was and I was admitted for 3 days. They didn't find any blockages in the arteries like they usually do in heart patients so they sent me home saying that it must have been coronary artery spasms. All of the unexplained symptoms in my past are starting to come together and make sense. I am just wondering if the cardiac stuff could be related too. I am going to go have an eval by a cardiologist whenever I get the energy up. I don't know what normal fatigue is for sarcoidosis. I used to be able to get up and keep going until about 7 or 8 pm last summer before I got too tired to function, then it moved up to about 3 or 4:00. Then in Sept I was in the hospital for 9 days on IV decacron and got stronger. Now I am to the point where I can't make it though the day without a nap by about noon or 1pm and am still exhausted most of the rest of the day. I noticed I sweat a lot (not normal for me). Today at church even standing to sing made me weak and sweat. I sat down and realized that I think i am sweating so much because I am getting exhausted doing simple things (like most people sweat when they do something physically strenuous). Is that normal fatigue for sarcoid? Isn't it amazing that other countries are so far ahead of us in some things? My son used to be sick with a rare metabolic disease and the doctors her were consulting doctors in Denmark because they are further ahead of the US in metabolic diseases. Thanks so much for taking the time to answer my questions. I have had so many questions for a year now and knew noone who had any answers. I am more thankful for answers than I can say. The doctors don't even seem to know a lot about it. You guys have had more info than I got from any doctors so far. Thank you so much! I will keep you in my prayers Thursday! Thanks again! Cathytracie feldhaus wrote: Cathy, Typical dose is 70-210 milligrams of capsulescontaining the active ingredient of MT--silymarin 3xdaily, or 1/4 to 1tsp of MT tincture 3x daily. (THEHERBAL DRUGSTORE- BY White MD.)You cannot overdose== and there are no druginteractions. Health Food Stores are a good place to find it.For the "inside" the bone pain--- use MSM Powder-- Iget mine thru PUREMSM.COM. Since I started using it,I have not needed my pain meds.As for the heart-- I've been having more chest andleft arm pain, and was fighting extreme (way overnormal extreme for us) fatigue when I'd try to doanything-- even to walk across a parking lot to go dothe grocery shopping. I have Stage 4 Pulm Sarc-- andit's only been since I got on the Remicade that I wasable to go without O2 for the last 18 months. Butthis winter has brought back this problem-- so I'msure that next week they'll put me back on the O2.We found it when they did an echocardiogram-- and itshowed moderate pulm hypertension. This week on ThursI do a cardiolyte stress test and nuclear scan-- tosee if we can get a better idea of what ishappening-- and I suspect they'll want to do a rightheart cath to see exactly what the pressures are.The Rheumi in Sac did tell me there are plenty of newmeds to treat PH-- and that they are working well-- soI'm hopeful we can get the progression stopped. In the meantime-- no aerobics! My heartrate restingis already at 90-- so I hit my acceptable high in acouple of minutes -- and they only let me get up to105 beats per minute--- Actually, even before the chest pain incident-- I hada EEG-- brain wave study, and they thought that itshowed a "Right Bundle Branch Block." The docs blewit off-- -until you go into total failure- it's not aproblem-- But with cardiac sarc-- a study in China showed thatout of 93 patients that died of sarc complications--76 of them had undiagnosed RBBB. Hmmm, they catchalot of patients over there with cardiac sarc-- thegood old USA is once again hiding from the eightball...Sincerely,TracieNS Co-owner/moderator--- Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote:> Tracie,> Thank you so much! How much of the Milk Thistle> Capsules should I take? Do you get them at a health> food store? That's really good to know that the sq> methotrexate bypasses the liver. Last time I was in> the hospital my heart rate would drop down to 40 at> night, even if I was awake. They said that could> suggest heart involvement with sarcoid. They did an> echo and didn't see any nodules. My EF was only 53%> though. How did you know it got to your heart? What> symptoms did you have?> Thanks so much!> Cathy> > tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com> wrote:> Cathy, Welcome to the group I'm wish> you didn't need to learn about this disease. ...> I see where they have started you on> Plaquenil--this is good. I know it helped me with> the brain fog part, and the systemic body pain. It> also helps with my lung sarc.> It's interesting about the Alpha 1 trypshin or> whatever it's called. The post I sent on to the> group from the Arthritis Foundation addresses that> issue in asthma patients.> Methotrexate can be given by injection - Subq. It> totally bypasses the liver that way, and still works> well. Also-- whenever liver health is an issue---GET> YOURSELF ON MILK THISTLE CAPSULES! It is a natural> liver detox, and works wonders. I found out about> it a few years ago from a friend that had had> childhood Hodgkins Lymphoma back in the 60's. She> was one of the first 8 kids that got radiation and> they used such high doses-- that even tho the> Hodgkins was cured-- the secondary scarring of her> organs, heart liver lungs esophagus, stomach--> generally killed all these kids as young adults. At> the age of 49-- she was the oldest survivor of> Hodgkins from that era. > She ended up developing such scarring around the> peri-cardial sac around her heart-- that they had to> remove it when she was 46. The docs at Stanford> told her 2 days, 2 weeks, 2 months-- tops. She> lived another 3 yrs.> Her liver was in serious shape, and had developed> cancer-- her oncologist got her on Milk Thistle, and> when she died, her liver was in wonderful> condition-- the cancer had gone to her bones... He> did tell her that cirrhosis and liver cancer along> with Hepatitis all respond well to Milk Thistle. I> know that I use it and even on MTX, Plaquenil and> Remicade-- my liver enzymes are all normal now! > You asked if this is a slow progression-- fatigue,> brain fog, extremity weakness-- it seems to progress> that way in many of us. What I have noticed since I> started on the Remicade over 15 months ago is that> my bone pain, the joint and ligament pain, the brain> fog-- are all much better. I have started having> problems with my lungs and heart lately- and am> developing more pulmonary fibrosis with pulmonary> hypertension-- so it isn't stopping that part. I> don't know what the answer is -- and after living> with this for the last 17 yrs--- I'm not frantically> searching -- > The exhaustion is worse-- but I suspect it's the> PPH more than the sarc. (Actually it's Secondary> Pulm Hypertension._ > One thing that is becoming apparent in the studies> is that somehow we came into contact with a virus or> bacterial infection that turned on our immune> system, and now our bodies can't clear out the TNF-b> cells (we produce too many) and they build on the> other immune cells forming the granulomas. This is> why they are looking at TNF-B blockers-- the> "Biologicals" BRM's. Biological Response> Modifiers. > Here is a great site to check out for explanation> of the DMARDS and BRMS--www.arthritis.org. > Use a 2007 or 2006 Prescription drug issue and you> will be amazed at the choices we have.> > I do hope this helps,> Sincerely,> Tracie > NSCo-owner/moderator> > Re: NS dx> > Thank you so much for your reply. I have had> neuro symptoms for a year now and it seems like over> all my condition declines, but it's like a roller> coaster, some days I feel like I am getting better> (like when I start prednisone again---I hate> prednisone though) and then I am back to bad or> worse. Is that the way it goes? Just a downward> progressive spiral? I am a nurse to. I never dreamed> I would end up with something like this. I read it> hits healthcare workers frequently. I am weaning off> of prednisone again,so I feel rotten. The Plaquenil> is helping with the pain, but the fatigue is> horrible. The weakness and numbness seem to keep> getting worse. They are hesitant to use methotrexate> because they also found I have a liver disease that> I never heard of before (Alpha 1 anti trypsin> deficiency-sp? ) that means my liver's not producing> the protien needed in my lungs that protect against> an immune response (great thing to have in> combination with sarcoid huh?). Anyway, I> guess the liver makes the protien the wrong shape> and it clogs up the liver, because it can't leave> the liver and leaves your lungs unprotected,> predisposed to severe emphysema at an early age. I> just rec'd that dx, so have a lot to learn about it.> thanks for your time and info! It is so great to> finally have someone to talk to who understands.> Thanks so much!!!!!!> > Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I> was dx with Sarcoid almost 13 years ago, NS 5 years> ago, I have had just about all your symptoms, right> now I am just slowly losing the use of my left side> and legs, On Plaquanil, Methotrexate, and many other> drugs to treat symptoms, this week I have a hearing> with the insurance company to appeal their denial on> Remicade which is the drug I know need. I left my> job as an RN, Labor and delivery nurse almost 5> years ago, hardly seems possible, I keep my self> busy with an in home small business or I would go> crazy, or maybe already there. > There are many of us here that have been through all> this, and much more, this is a wonderful supportive> group, with very knowledgeable moderators and we are> blessed to have them. Many of them are sick right> now, but still check in when they can. you have> found a good home here, I hope you find your answers> here, and the support you need. Ask away, and whine> when needed, we all do. > God Bless you, Marla > > -- > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all> with Yahoo! Mobile. Try it now. > > > > > > > > > > > ---------------------------------> Looking for last minute shopping deals? Find them> fast with Yahoo! Search. Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Thanks Tracie, We are going to go get some Friday (payday). What is MSM? I have heard other people talk about it. I ask about the heart thing also because a few years ago (before I knew I had sarcoidosis in my lungs--they just said I kept having recurring pneumonia for about 4 years for an unknown reason) I had severe chest pain and left arm pain and it appeared I was having a heart attack. The squad and the ER thought I was and I was admitted for 3 days. They didn't find any blockages in the arteries like they usually do in heart patients so they sent me home saying that it must have been coronary artery spasms. All of the unexplained symptoms in my past are starting to come together and make sense. I am just wondering if the cardiac stuff could be related too. I am going to go have an eval by a cardiologist whenever I get the energy up. I don't know what normal fatigue is for sarcoidosis. I used to be able to get up and keep going until about 7 or 8 pm last summer before I got too tired to function, then it moved up to about 3 or 4:00. Then in Sept I was in the hospital for 9 days on IV decacron and got stronger. Now I am to the point where I can't make it though the day without a nap by about noon or 1pm and am still exhausted most of the rest of the day. I noticed I sweat a lot (not normal for me). Today at church even standing to sing made me weak and sweat. I sat down and realized that I think i am sweating so much because I am getting exhausted doing simple things (like most people sweat when they do something physically strenuous). Is that normal fatigue for sarcoid? Isn't it amazing that other countries are so far ahead of us in some things? My son used to be sick with a rare metabolic disease and the doctors her were consulting doctors in Denmark because they are further ahead of the US in metabolic diseases. Thanks so much for taking the time to answer my questions. I have had so many questions for a year now and knew noone who had any answers. I am more thankful for answers than I can say. The doctors don't even seem to know a lot about it. You guys have had more info than I got from any doctors so far. Thank you so much! I will keep you in my prayers Thursday! Thanks again! Cathytracie feldhaus wrote: Cathy, Typical dose is 70-210 milligrams of capsulescontaining the active ingredient of MT--silymarin 3xdaily, or 1/4 to 1tsp of MT tincture 3x daily. (THEHERBAL DRUGSTORE- BY White MD.)You cannot overdose== and there are no druginteractions. Health Food Stores are a good place to find it.For the "inside" the bone pain--- use MSM Powder-- Iget mine thru PUREMSM.COM. Since I started using it,I have not needed my pain meds.As for the heart-- I've been having more chest andleft arm pain, and was fighting extreme (way overnormal extreme for us) fatigue when I'd try to doanything-- even to walk across a parking lot to go dothe grocery shopping. I have Stage 4 Pulm Sarc-- andit's only been since I got on the Remicade that I wasable to go without O2 for the last 18 months. Butthis winter has brought back this problem-- so I'msure that next week they'll put me back on the O2.We found it when they did an echocardiogram-- and itshowed moderate pulm hypertension. This week on ThursI do a cardiolyte stress test and nuclear scan-- tosee if we can get a better idea of what ishappening-- and I suspect they'll want to do a rightheart cath to see exactly what the pressures are.The Rheumi in Sac did tell me there are plenty of newmeds to treat PH-- and that they are working well-- soI'm hopeful we can get the progression stopped. In the meantime-- no aerobics! My heartrate restingis already at 90-- so I hit my acceptable high in acouple of minutes -- and they only let me get up to105 beats per minute--- Actually, even before the chest pain incident-- I hada EEG-- brain wave study, and they thought that itshowed a "Right Bundle Branch Block." The docs blewit off-- -until you go into total failure- it's not aproblem-- But with cardiac sarc-- a study in China showed thatout of 93 patients that died of sarc complications--76 of them had undiagnosed RBBB. Hmmm, they catchalot of patients over there with cardiac sarc-- thegood old USA is once again hiding from the eightball...Sincerely,TracieNS Co-owner/moderator--- Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote:> Tracie,> Thank you so much! How much of the Milk Thistle> Capsules should I take? Do you get them at a health> food store? That's really good to know that the sq> methotrexate bypasses the liver. Last time I was in> the hospital my heart rate would drop down to 40 at> night, even if I was awake. They said that could> suggest heart involvement with sarcoid. They did an> echo and didn't see any nodules. My EF was only 53%> though. How did you know it got to your heart? What> symptoms did you have?> Thanks so much!> Cathy> > tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com> wrote:> Cathy, Welcome to the group I'm wish> you didn't need to learn about this disease. ...> I see where they have started you on> Plaquenil--this is good. I know it helped me with> the brain fog part, and the systemic body pain. It> also helps with my lung sarc.> It's interesting about the Alpha 1 trypshin or> whatever it's called. The post I sent on to the> group from the Arthritis Foundation addresses that> issue in asthma patients.> Methotrexate can be given by injection - Subq. It> totally bypasses the liver that way, and still works> well. Also-- whenever liver health is an issue---GET> YOURSELF ON MILK THISTLE CAPSULES! It is a natural> liver detox, and works wonders. I found out about> it a few years ago from a friend that had had> childhood Hodgkins Lymphoma back in the 60's. She> was one of the first 8 kids that got radiation and> they used such high doses-- that even tho the> Hodgkins was cured-- the secondary scarring of her> organs, heart liver lungs esophagus, stomach--> generally killed all these kids as young adults. At> the age of 49-- she was the oldest survivor of> Hodgkins from that era. > She ended up developing such scarring around the> peri-cardial sac around her heart-- that they had to> remove it when she was 46. The docs at Stanford> told her 2 days, 2 weeks, 2 months-- tops. She> lived another 3 yrs.> Her liver was in serious shape, and had developed> cancer-- her oncologist got her on Milk Thistle, and> when she died, her liver was in wonderful> condition-- the cancer had gone to her bones... He> did tell her that cirrhosis and liver cancer along> with Hepatitis all respond well to Milk Thistle. I> know that I use it and even on MTX, Plaquenil and> Remicade-- my liver enzymes are all normal now! > You asked if this is a slow progression-- fatigue,> brain fog, extremity weakness-- it seems to progress> that way in many of us. What I have noticed since I> started on the Remicade over 15 months ago is that> my bone pain, the joint and ligament pain, the brain> fog-- are all much better. I have started having> problems with my lungs and heart lately- and am> developing more pulmonary fibrosis with pulmonary> hypertension-- so it isn't stopping that part. I> don't know what the answer is -- and after living> with this for the last 17 yrs--- I'm not frantically> searching -- > The exhaustion is worse-- but I suspect it's the> PPH more than the sarc. (Actually it's Secondary> Pulm Hypertension._ > One thing that is becoming apparent in the studies> is that somehow we came into contact with a virus or> bacterial infection that turned on our immune> system, and now our bodies can't clear out the TNF-b> cells (we produce too many) and they build on the> other immune cells forming the granulomas. This is> why they are looking at TNF-B blockers-- the> "Biologicals" BRM's. Biological Response> Modifiers. > Here is a great site to check out for explanation> of the DMARDS and BRMS--www.arthritis.org. > Use a 2007 or 2006 Prescription drug issue and you> will be amazed at the choices we have.> > I do hope this helps,> Sincerely,> Tracie > NSCo-owner/moderator> > Re: NS dx> > Thank you so much for your reply. I have had> neuro symptoms for a year now and it seems like over> all my condition declines, but it's like a roller> coaster, some days I feel like I am getting better> (like when I start prednisone again---I hate> prednisone though) and then I am back to bad or> worse. Is that the way it goes? Just a downward> progressive spiral? I am a nurse to. I never dreamed> I would end up with something like this. I read it> hits healthcare workers frequently. I am weaning off> of prednisone again,so I feel rotten. The Plaquenil> is helping with the pain, but the fatigue is> horrible. The weakness and numbness seem to keep> getting worse. They are hesitant to use methotrexate> because they also found I have a liver disease that> I never heard of before (Alpha 1 anti trypsin> deficiency-sp? ) that means my liver's not producing> the protien needed in my lungs that protect against> an immune response (great thing to have in> combination with sarcoid huh?). Anyway, I> guess the liver makes the protien the wrong shape> and it clogs up the liver, because it can't leave> the liver and leaves your lungs unprotected,> predisposed to severe emphysema at an early age. I> just rec'd that dx, so have a lot to learn about it.> thanks for your time and info! It is so great to> finally have someone to talk to who understands.> Thanks so much!!!!!!> > Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I> was dx with Sarcoid almost 13 years ago, NS 5 years> ago, I have had just about all your symptoms, right> now I am just slowly losing the use of my left side> and legs, On Plaquanil, Methotrexate, and many other> drugs to treat symptoms, this week I have a hearing> with the insurance company to appeal their denial on> Remicade which is the drug I know need. I left my> job as an RN, Labor and delivery nurse almost 5> years ago, hardly seems possible, I keep my self> busy with an in home small business or I would go> crazy, or maybe already there. > There are many of us here that have been through all> this, and much more, this is a wonderful supportive> group, with very knowledgeable moderators and we are> blessed to have them. Many of them are sick right> now, but still check in when they can. you have> found a good home here, I hope you find your answers> here, and the support you need. Ask away, and whine> when needed, we all do. > God Bless you, Marla > > -- > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all> with Yahoo! Mobile. Try it now. > > > > > > > > > > > ---------------------------------> Looking for last minute shopping deals? Find them> fast with Yahoo! Search. Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 MSM is a natural mineral that we have engineered out of our soil, our food. If you look in the ARCHIVES-- you can search by MSM-- and you'll find a bunch of posts I've done on it. Also at PUREMSM.COM they explain what it does. Part of the constant inflammation is that we run a constant- low grade fever. This is one of the most common symptom-- and it has a tendency to keep you borderline dehydrated. Which adds to the exhaustion factor. If you are one of those that enjoys coffee, teas, alcholol or sodas-- cut them out. They all add to dehydration. You can switch to decaf choices, and that might help. --- Cathy Borden wrote: > Thanks Tracie, > We are going to go get some Friday (payday). What > is MSM? I have heard other people talk about it. I > ask about the heart thing also because a few years > ago (before I knew I had sarcoidosis in my > lungs--they just said I kept having recurring > pneumonia for about 4 years for an unknown reason) I > had severe chest pain and left arm pain and it > appeared I was having a heart attack. The squad and > the ER thought I was and I was admitted for 3 days. > They didn't find any blockages in the arteries like > they usually do in heart patients so they sent me > home saying that it must have been coronary artery > spasms. All of the unexplained symptoms in my past > are starting to come together and make sense. I am > just wondering if the cardiac stuff could be related > too. I am going to go have an eval by a cardiologist > whenever I get the energy up. I don't know what > normal fatigue is for sarcoidosis. I used to be able > to get up and keep going until about 7 or 8 pm last > summer before I got too > tired to function, then it moved up to about 3 or > 4:00. Then in Sept I was in the hospital for 9 days > on IV decacron and got stronger. Now I am to the > point where I can't make it though the day without a > nap by about noon or 1pm and am still exhausted most > of the rest of the day. I noticed I sweat a lot (not > normal for me). Today at church even standing to > sing made me weak and sweat. I sat down and realized > that I think i am sweating so much because I am > getting exhausted doing simple things (like most > people sweat when they do something physically > strenuous). Is that normal fatigue for sarcoid? > Isn't it amazing that other countries are so far > ahead of us in some things? My son used to be sick > with a rare metabolic disease and the doctors her > were consulting doctors in Denmark because they are > further ahead of the US in metabolic diseases. > Thanks so much for taking the time to answer my > questions. I have had so many questions for a year > now and knew noone who had any answers. I am more > thankful for answers than I can say. The doctors > don't even seem to know a lot about it. You guys > have had more info than I got from any doctors so > far. Thank you so much! > I will keep you in my prayers Thursday! > Thanks again! > Cathy > > tracie feldhaus wrote: > Cathy, Typical dose is 70-210 milligrams > of capsules > containing the active ingredient of MT--silymarin 3x > daily, or 1/4 to 1tsp of MT tincture 3x daily. (THE > HERBAL DRUGSTORE- BY White MD.) > You cannot overdose== and there are no drug > interactions. > Health Food Stores are a good place to find it. > For the " inside " the bone pain--- use MSM Powder-- I > get mine thru PUREMSM.COM. Since I started using it, > I have not needed my pain meds. > As for the heart-- I've been having more chest and > left arm pain, and was fighting extreme (way over > normal extreme for us) fatigue when I'd try to do > anything-- even to walk across a parking lot to go > do > the grocery shopping. I have Stage 4 Pulm Sarc-- and > it's only been since I got on the Remicade that I > was > able to go without O2 for the last 18 months. But > this winter has brought back this problem-- so I'm > sure that next week they'll put me back on the O2. > We found it when they did an echocardiogram-- and it > showed moderate pulm hypertension. This week on > Thurs > I do a cardiolyte stress test and nuclear scan-- to > see if we can get a better idea of what is > happening-- and I suspect they'll want to do a right > heart cath to see exactly what the pressures are. > The Rheumi in Sac did tell me there are plenty of > new > meds to treat PH-- and that they are working well-- > so > I'm hopeful we can get the progression stopped. > In the meantime-- no aerobics! My heartrate resting > is already at 90-- so I hit my acceptable high in a > couple of minutes -- and they only let me get up to > 105 beats per minute--- > Actually, even before the chest pain incident-- I > had > a EEG-- brain wave study, and they thought that it > showed a " Right Bundle Branch Block. " The docs blew > it off-- -until you go into total failure- it's not > a > problem-- > But with cardiac sarc-- a study in China showed that > out of 93 patients that died of sarc complications-- > 76 of them had undiagnosed RBBB. Hmmm, they catch > alot of patients over there with cardiac sarc-- the > good old USA is once again hiding from the eight > ball... > > Sincerely, > Tracie > NS Co-owner/moderator > > --- Cathy Borden wrote: > > > Tracie, > > Thank you so much! How much of the Milk Thistle > > Capsules should I take? Do you get them at a > health > > food store? That's really good to know that the sq > > methotrexate bypasses the liver. Last time I was > in > > the hospital my heart rate would drop down to 40 > at > > night, even if I was awake. They said that could > > suggest heart involvement with sarcoid. They did > an > > echo and didn't see any nodules. My EF was only > 53% > > though. How did you know it got to your heart? > What > > symptoms did you have? > > Thanks so much! > > Cathy > > > > tracie feldhaus wrote: > > Cathy, Welcome to the group I'm wish > > you didn't need to learn about this disease. ... > > I see where they have started you on > > Plaquenil--this is good. I know it helped me with > > the brain fog part, and the systemic body pain. It > > also helps with my lung sarc. > > It's interesting about the Alpha 1 trypshin or > > whatever it's called. The post I sent on to the > > group from the Arthritis Foundation addresses that > > issue in asthma patients. > > Methotrexate can be given by injection - Subq. It > > totally bypasses the liver that way, and still > works > > well. Also-- whenever liver health is an > issue---GET > > YOURSELF ON MILK THISTLE CAPSULES! It is a natural > > liver detox, and works wonders. I found out about > > it a few years ago from a friend that had had > > childhood Hodgkins Lymphoma back in the 60's. She > > was one of the first 8 kids that got radiation and > > they used such high doses-- that even tho the > > Hodgkins was cured-- the secondary scarring of her > > organs, heart liver lungs esophagus, stomach-- > > generally killed all these kids as young adults. > At > > the age of 49-- she was the oldest survivor of > > Hodgkins from that era. > > She ended up developing such scarring around the > > peri-cardial sac around her heart-- that they had > to > > remove it when she was 46. The docs at Stanford > > told her 2 days, 2 weeks, 2 months-- tops. She > > lived another 3 yrs. > > Her liver was in serious shape, and had developed > > cancer-- her oncologist got her on Milk Thistle, > and > > when she died, her liver was in wonderful > > condition-- the cancer had gone to her bones... He > > did tell her that cirrhosis and liver cancer along > > with Hepatitis all respond well to Milk Thistle. I > > know that I use it and even on MTX, Plaquenil and > > Remicade-- my liver enzymes are all normal now! > > You asked if this is a slow progression-- fatigue, > > brain fog, extremity weakness-- it seems to > progress > > that way in many of us. What I have noticed since > I > > started on the Remicade over 15 months ago is that > > my bone pain, the joint and ligament pain, the > brain > > fog-- are all much better. I have started having > > problems with my lungs and heart lately- and am > > developing more pulmonary fibrosis with pulmonary > > hypertension-- so it isn't stopping that part. I > > don't know what the answer is -- and after living > > with this for the last 17 yrs--- I'm not > frantically > > searching -- > > The exhaustion is worse-- but I suspect it's the > > PPH more than the sarc. (Actually it's Secondary > > Pulm Hypertension._ > > One thing that is becoming apparent in the studies > > is that somehow we came into contact with a virus > or > > bacterial infection that turned on our immune > > system, and now our bodies can't clear out the > TNF-b > > cells (we produce too many) and they build on the > > other immune cells forming the granulomas. This is > > why they are looking at TNF-B blockers-- the > > " Biologicals " BRM's. Biological Response > > Modifiers. > === message truncated === Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 MSM is a natural mineral that we have engineered out of our soil, our food. If you look in the ARCHIVES-- you can search by MSM-- and you'll find a bunch of posts I've done on it. Also at PUREMSM.COM they explain what it does. Part of the constant inflammation is that we run a constant- low grade fever. This is one of the most common symptom-- and it has a tendency to keep you borderline dehydrated. Which adds to the exhaustion factor. If you are one of those that enjoys coffee, teas, alcholol or sodas-- cut them out. They all add to dehydration. You can switch to decaf choices, and that might help. --- Cathy Borden wrote: > Thanks Tracie, > We are going to go get some Friday (payday). What > is MSM? I have heard other people talk about it. I > ask about the heart thing also because a few years > ago (before I knew I had sarcoidosis in my > lungs--they just said I kept having recurring > pneumonia for about 4 years for an unknown reason) I > had severe chest pain and left arm pain and it > appeared I was having a heart attack. The squad and > the ER thought I was and I was admitted for 3 days. > They didn't find any blockages in the arteries like > they usually do in heart patients so they sent me > home saying that it must have been coronary artery > spasms. All of the unexplained symptoms in my past > are starting to come together and make sense. I am > just wondering if the cardiac stuff could be related > too. I am going to go have an eval by a cardiologist > whenever I get the energy up. I don't know what > normal fatigue is for sarcoidosis. I used to be able > to get up and keep going until about 7 or 8 pm last > summer before I got too > tired to function, then it moved up to about 3 or > 4:00. Then in Sept I was in the hospital for 9 days > on IV decacron and got stronger. Now I am to the > point where I can't make it though the day without a > nap by about noon or 1pm and am still exhausted most > of the rest of the day. I noticed I sweat a lot (not > normal for me). Today at church even standing to > sing made me weak and sweat. I sat down and realized > that I think i am sweating so much because I am > getting exhausted doing simple things (like most > people sweat when they do something physically > strenuous). Is that normal fatigue for sarcoid? > Isn't it amazing that other countries are so far > ahead of us in some things? My son used to be sick > with a rare metabolic disease and the doctors her > were consulting doctors in Denmark because they are > further ahead of the US in metabolic diseases. > Thanks so much for taking the time to answer my > questions. I have had so many questions for a year > now and knew noone who had any answers. I am more > thankful for answers than I can say. The doctors > don't even seem to know a lot about it. You guys > have had more info than I got from any doctors so > far. Thank you so much! > I will keep you in my prayers Thursday! > Thanks again! > Cathy > > tracie feldhaus wrote: > Cathy, Typical dose is 70-210 milligrams > of capsules > containing the active ingredient of MT--silymarin 3x > daily, or 1/4 to 1tsp of MT tincture 3x daily. (THE > HERBAL DRUGSTORE- BY White MD.) > You cannot overdose== and there are no drug > interactions. > Health Food Stores are a good place to find it. > For the " inside " the bone pain--- use MSM Powder-- I > get mine thru PUREMSM.COM. Since I started using it, > I have not needed my pain meds. > As for the heart-- I've been having more chest and > left arm pain, and was fighting extreme (way over > normal extreme for us) fatigue when I'd try to do > anything-- even to walk across a parking lot to go > do > the grocery shopping. I have Stage 4 Pulm Sarc-- and > it's only been since I got on the Remicade that I > was > able to go without O2 for the last 18 months. But > this winter has brought back this problem-- so I'm > sure that next week they'll put me back on the O2. > We found it when they did an echocardiogram-- and it > showed moderate pulm hypertension. This week on > Thurs > I do a cardiolyte stress test and nuclear scan-- to > see if we can get a better idea of what is > happening-- and I suspect they'll want to do a right > heart cath to see exactly what the pressures are. > The Rheumi in Sac did tell me there are plenty of > new > meds to treat PH-- and that they are working well-- > so > I'm hopeful we can get the progression stopped. > In the meantime-- no aerobics! My heartrate resting > is already at 90-- so I hit my acceptable high in a > couple of minutes -- and they only let me get up to > 105 beats per minute--- > Actually, even before the chest pain incident-- I > had > a EEG-- brain wave study, and they thought that it > showed a " Right Bundle Branch Block. " The docs blew > it off-- -until you go into total failure- it's not > a > problem-- > But with cardiac sarc-- a study in China showed that > out of 93 patients that died of sarc complications-- > 76 of them had undiagnosed RBBB. Hmmm, they catch > alot of patients over there with cardiac sarc-- the > good old USA is once again hiding from the eight > ball... > > Sincerely, > Tracie > NS Co-owner/moderator > > --- Cathy Borden wrote: > > > Tracie, > > Thank you so much! How much of the Milk Thistle > > Capsules should I take? Do you get them at a > health > > food store? That's really good to know that the sq > > methotrexate bypasses the liver. Last time I was > in > > the hospital my heart rate would drop down to 40 > at > > night, even if I was awake. They said that could > > suggest heart involvement with sarcoid. They did > an > > echo and didn't see any nodules. My EF was only > 53% > > though. How did you know it got to your heart? > What > > symptoms did you have? > > Thanks so much! > > Cathy > > > > tracie feldhaus wrote: > > Cathy, Welcome to the group I'm wish > > you didn't need to learn about this disease. ... > > I see where they have started you on > > Plaquenil--this is good. I know it helped me with > > the brain fog part, and the systemic body pain. It > > also helps with my lung sarc. > > It's interesting about the Alpha 1 trypshin or > > whatever it's called. The post I sent on to the > > group from the Arthritis Foundation addresses that > > issue in asthma patients. > > Methotrexate can be given by injection - Subq. It > > totally bypasses the liver that way, and still > works > > well. Also-- whenever liver health is an > issue---GET > > YOURSELF ON MILK THISTLE CAPSULES! It is a natural > > liver detox, and works wonders. I found out about > > it a few years ago from a friend that had had > > childhood Hodgkins Lymphoma back in the 60's. She > > was one of the first 8 kids that got radiation and > > they used such high doses-- that even tho the > > Hodgkins was cured-- the secondary scarring of her > > organs, heart liver lungs esophagus, stomach-- > > generally killed all these kids as young adults. > At > > the age of 49-- she was the oldest survivor of > > Hodgkins from that era. > > She ended up developing such scarring around the > > peri-cardial sac around her heart-- that they had > to > > remove it when she was 46. The docs at Stanford > > told her 2 days, 2 weeks, 2 months-- tops. She > > lived another 3 yrs. > > Her liver was in serious shape, and had developed > > cancer-- her oncologist got her on Milk Thistle, > and > > when she died, her liver was in wonderful > > condition-- the cancer had gone to her bones... He > > did tell her that cirrhosis and liver cancer along > > with Hepatitis all respond well to Milk Thistle. I > > know that I use it and even on MTX, Plaquenil and > > Remicade-- my liver enzymes are all normal now! > > You asked if this is a slow progression-- fatigue, > > brain fog, extremity weakness-- it seems to > progress > > that way in many of us. What I have noticed since > I > > started on the Remicade over 15 months ago is that > > my bone pain, the joint and ligament pain, the > brain > > fog-- are all much better. I have started having > > problems with my lungs and heart lately- and am > > developing more pulmonary fibrosis with pulmonary > > hypertension-- so it isn't stopping that part. I > > don't know what the answer is -- and after living > > with this for the last 17 yrs--- I'm not > frantically > > searching -- > > The exhaustion is worse-- but I suspect it's the > > PPH more than the sarc. (Actually it's Secondary > > Pulm Hypertension._ > > One thing that is becoming apparent in the studies > > is that somehow we came into contact with a virus > or > > bacterial infection that turned on our immune > > system, and now our bodies can't clear out the > TNF-b > > cells (we produce too many) and they build on the > > other immune cells forming the granulomas. This is > > why they are looking at TNF-B blockers-- the > > " Biologicals " BRM's. Biological Response > > Modifiers. > === message truncated === Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Thank you. I haven't looked at the archives yet. Guess I should before I ask more questions. Sorry. I do drink a few cups of coffee a day and I always seem thirsty. I will switch to decaf right away. Thanks again!tracie feldhaus wrote: MSM is a natural mineral that we have engineered outof our soil, our food. If you look in the ARCHIVES--you can search by MSM-- and you'll find a bunch ofposts I've done on it. Also at PUREMSM.COM theyexplain what it does. Part of the constant inflammation is that we run aconstant- low grade fever. This is one of the mostcommon symptom-- and it has a tendency to keep youborderline dehydrated. Which adds to the exhaustionfactor. If you are one of those that enjoys coffee, teas,alcholol or sodas-- cut them out. They all add todehydration. You can switch to decaf choices, andthat might help.--- Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote:> Thanks Tracie,> We are going to go get some Friday (payday). What> is MSM? I have heard other people talk about it. I> ask about the heart thing also because a few years> ago (before I knew I had sarcoidosis in my> lungs--they just said I kept having recurring> pneumonia for about 4 years for an unknown reason) I> had severe chest pain and left arm pain and it> appeared I was having a heart attack. The squad and> the ER thought I was and I was admitted for 3 days.> They didn't find any blockages in the arteries like> they usually do in heart patients so they sent me> home saying that it must have been coronary artery> spasms. All of the unexplained symptoms in my past> are starting to come together and make sense. I am> just wondering if the cardiac stuff could be related> too. I am going to go have an eval by a cardiologist> whenever I get the energy up. I don't know what> normal fatigue is for sarcoidosis. I used to be able> to get up and keep going until about 7 or 8 pm last> summer before I got too> tired to function, then it moved up to about 3 or> 4:00. Then in Sept I was in the hospital for 9 days> on IV decacron and got stronger. Now I am to the> point where I can't make it though the day without a> nap by about noon or 1pm and am still exhausted most> of the rest of the day. I noticed I sweat a lot (not> normal for me). Today at church even standing to> sing made me weak and sweat. I sat down and realized> that I think i am sweating so much because I am> getting exhausted doing simple things (like most> people sweat when they do something physically> strenuous). Is that normal fatigue for sarcoid?> Isn't it amazing that other countries are so far> ahead of us in some things? My son used to be sick> with a rare metabolic disease and the doctors her> were consulting doctors in Denmark because they are> further ahead of the US in metabolic diseases. > Thanks so much for taking the time to answer my> questions. I have had so many questions for a year> now and knew noone who had any answers. I am more> thankful for answers than I can say. The doctors> don't even seem to know a lot about it. You guys> have had more info than I got from any doctors so> far. Thank you so much!> I will keep you in my prayers Thursday! > Thanks again!> Cathy> > tracie feldhaus <tiodaat (AT) att (DOT) net> wrote:> Cathy, Typical dose is 70-210 milligrams> of capsules> containing the active ingredient of MT--silymarin 3x> daily, or 1/4 to 1tsp of MT tincture 3x daily. (THE> HERBAL DRUGSTORE- BY White MD.)> You cannot overdose== and there are no drug> interactions. > Health Food Stores are a good place to find it.> For the "inside" the bone pain--- use MSM Powder-- I> get mine thru PUREMSM.COM. Since I started using it,> I have not needed my pain meds.> As for the heart-- I've been having more chest and> left arm pain, and was fighting extreme (way over> normal extreme for us) fatigue when I'd try to do> anything-- even to walk across a parking lot to go> do> the grocery shopping. I have Stage 4 Pulm Sarc-- and> it's only been since I got on the Remicade that I> was> able to go without O2 for the last 18 months. But> this winter has brought back this problem-- so I'm> sure that next week they'll put me back on the O2.> We found it when they did an echocardiogram-- and it> showed moderate pulm hypertension. This week on> Thurs> I do a cardiolyte stress test and nuclear scan-- to> see if we can get a better idea of what is> happening-- and I suspect they'll want to do a right> heart cath to see exactly what the pressures are.> The Rheumi in Sac did tell me there are plenty of> new> meds to treat PH-- and that they are working well--> so> I'm hopeful we can get the progression stopped. > In the meantime-- no aerobics! My heartrate resting> is already at 90-- so I hit my acceptable high in a> couple of minutes -- and they only let me get up to> 105 beats per minute--- > Actually, even before the chest pain incident-- I> had> a EEG-- brain wave study, and they thought that it> showed a "Right Bundle Branch Block." The docs blew> it off-- -until you go into total failure- it's not> a> problem-- > But with cardiac sarc-- a study in China showed that> out of 93 patients that died of sarc complications--> 76 of them had undiagnosed RBBB. Hmmm, they catch> alot of patients over there with cardiac sarc-- the> good old USA is once again hiding from the eight> ball...> > Sincerely,> Tracie> NS Co-owner/moderator> > --- Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote:> > > Tracie,> > Thank you so much! How much of the Milk Thistle> > Capsules should I take? Do you get them at a> health> > food store? That's really good to know that the sq> > methotrexate bypasses the liver. Last time I was> in> > the hospital my heart rate would drop down to 40> at> > night, even if I was awake. They said that could> > suggest heart involvement with sarcoid. They did> an> > echo and didn't see any nodules. My EF was only> 53%> > though. How did you know it got to your heart?> What> > symptoms did you have?> > Thanks so much!> > Cathy> > > > tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com> wrote:> > Cathy, Welcome to the group I'm wish> > you didn't need to learn about this disease. ...> > I see where they have started you on> > Plaquenil--this is good. I know it helped me with> > the brain fog part, and the systemic body pain. It> > also helps with my lung sarc.> > It's interesting about the Alpha 1 trypshin or> > whatever it's called. The post I sent on to the> > group from the Arthritis Foundation addresses that> > issue in asthma patients.> > Methotrexate can be given by injection - Subq. It> > totally bypasses the liver that way, and still> works> > well. Also-- whenever liver health is an> issue---GET> > YOURSELF ON MILK THISTLE CAPSULES! It is a natural> > liver detox, and works wonders. I found out about> > it a few years ago from a friend that had had> > childhood Hodgkins Lymphoma back in the 60's. She> > was one of the first 8 kids that got radiation and> > they used such high doses-- that even tho the> > Hodgkins was cured-- the secondary scarring of her> > organs, heart liver lungs esophagus, stomach--> > generally killed all these kids as young adults.> At> > the age of 49-- she was the oldest survivor of> > Hodgkins from that era. > > She ended up developing such scarring around the> > peri-cardial sac around her heart-- that they had> to> > remove it when she was 46. The docs at Stanford> > told her 2 days, 2 weeks, 2 months-- tops. She> > lived another 3 yrs.> > Her liver was in serious shape, and had developed> > cancer-- her oncologist got her on Milk Thistle,> and> > when she died, her liver was in wonderful> > condition-- the cancer had gone to her bones... He> > did tell her that cirrhosis and liver cancer along> > with Hepatitis all respond well to Milk Thistle. I> > know that I use it and even on MTX, Plaquenil and> > Remicade-- my liver enzymes are all normal now! > > You asked if this is a slow progression-- fatigue,> > brain fog, extremity weakness-- it seems to> progress> > that way in many of us. What I have noticed since> I> > started on the Remicade over 15 months ago is that> > my bone pain, the joint and ligament pain, the> brain> > fog-- are all much better. I have started having> > problems with my lungs and heart lately- and am> > developing more pulmonary fibrosis with pulmonary> > hypertension-- so it isn't stopping that part. I> > don't know what the answer is -- and after living> > with this for the last 17 yrs--- I'm not> frantically> > searching -- > > The exhaustion is worse-- but I suspect it's the> > PPH more than the sarc. (Actually it's Secondary> > Pulm Hypertension._ > > One thing that is becoming apparent in the studies> > is that somehow we came into contact with a virus> or> > bacterial infection that turned on our immune> > system, and now our bodies can't clear out the> TNF-b> > cells (we produce too many) and they build on the> > other immune cells forming the granulomas. This is> > why they are looking at TNF-B blockers-- the> > "Biologicals" BRM's. Biological Response> > Modifiers. > === message truncated === Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Thank you. I haven't looked at the archives yet. Guess I should before I ask more questions. Sorry. I do drink a few cups of coffee a day and I always seem thirsty. I will switch to decaf right away. Thanks again!tracie feldhaus wrote: MSM is a natural mineral that we have engineered outof our soil, our food. If you look in the ARCHIVES--you can search by MSM-- and you'll find a bunch ofposts I've done on it. Also at PUREMSM.COM theyexplain what it does. Part of the constant inflammation is that we run aconstant- low grade fever. This is one of the mostcommon symptom-- and it has a tendency to keep youborderline dehydrated. Which adds to the exhaustionfactor. If you are one of those that enjoys coffee, teas,alcholol or sodas-- cut them out. They all add todehydration. You can switch to decaf choices, andthat might help.--- Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote:> Thanks Tracie,> We are going to go get some Friday (payday). What> is MSM? I have heard other people talk about it. I> ask about the heart thing also because a few years> ago (before I knew I had sarcoidosis in my> lungs--they just said I kept having recurring> pneumonia for about 4 years for an unknown reason) I> had severe chest pain and left arm pain and it> appeared I was having a heart attack. The squad and> the ER thought I was and I was admitted for 3 days.> They didn't find any blockages in the arteries like> they usually do in heart patients so they sent me> home saying that it must have been coronary artery> spasms. All of the unexplained symptoms in my past> are starting to come together and make sense. I am> just wondering if the cardiac stuff could be related> too. I am going to go have an eval by a cardiologist> whenever I get the energy up. I don't know what> normal fatigue is for sarcoidosis. I used to be able> to get up and keep going until about 7 or 8 pm last> summer before I got too> tired to function, then it moved up to about 3 or> 4:00. Then in Sept I was in the hospital for 9 days> on IV decacron and got stronger. Now I am to the> point where I can't make it though the day without a> nap by about noon or 1pm and am still exhausted most> of the rest of the day. I noticed I sweat a lot (not> normal for me). Today at church even standing to> sing made me weak and sweat. I sat down and realized> that I think i am sweating so much because I am> getting exhausted doing simple things (like most> people sweat when they do something physically> strenuous). Is that normal fatigue for sarcoid?> Isn't it amazing that other countries are so far> ahead of us in some things? My son used to be sick> with a rare metabolic disease and the doctors her> were consulting doctors in Denmark because they are> further ahead of the US in metabolic diseases. > Thanks so much for taking the time to answer my> questions. I have had so many questions for a year> now and knew noone who had any answers. I am more> thankful for answers than I can say. The doctors> don't even seem to know a lot about it. You guys> have had more info than I got from any doctors so> far. Thank you so much!> I will keep you in my prayers Thursday! > Thanks again!> Cathy> > tracie feldhaus <tiodaat (AT) att (DOT) net> wrote:> Cathy, Typical dose is 70-210 milligrams> of capsules> containing the active ingredient of MT--silymarin 3x> daily, or 1/4 to 1tsp of MT tincture 3x daily. (THE> HERBAL DRUGSTORE- BY White MD.)> You cannot overdose== and there are no drug> interactions. > Health Food Stores are a good place to find it.> For the "inside" the bone pain--- use MSM Powder-- I> get mine thru PUREMSM.COM. Since I started using it,> I have not needed my pain meds.> As for the heart-- I've been having more chest and> left arm pain, and was fighting extreme (way over> normal extreme for us) fatigue when I'd try to do> anything-- even to walk across a parking lot to go> do> the grocery shopping. I have Stage 4 Pulm Sarc-- and> it's only been since I got on the Remicade that I> was> able to go without O2 for the last 18 months. But> this winter has brought back this problem-- so I'm> sure that next week they'll put me back on the O2.> We found it when they did an echocardiogram-- and it> showed moderate pulm hypertension. This week on> Thurs> I do a cardiolyte stress test and nuclear scan-- to> see if we can get a better idea of what is> happening-- and I suspect they'll want to do a right> heart cath to see exactly what the pressures are.> The Rheumi in Sac did tell me there are plenty of> new> meds to treat PH-- and that they are working well--> so> I'm hopeful we can get the progression stopped. > In the meantime-- no aerobics! My heartrate resting> is already at 90-- so I hit my acceptable high in a> couple of minutes -- and they only let me get up to> 105 beats per minute--- > Actually, even before the chest pain incident-- I> had> a EEG-- brain wave study, and they thought that it> showed a "Right Bundle Branch Block." The docs blew> it off-- -until you go into total failure- it's not> a> problem-- > But with cardiac sarc-- a study in China showed that> out of 93 patients that died of sarc complications--> 76 of them had undiagnosed RBBB. Hmmm, they catch> alot of patients over there with cardiac sarc-- the> good old USA is once again hiding from the eight> ball...> > Sincerely,> Tracie> NS Co-owner/moderator> > --- Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote:> > > Tracie,> > Thank you so much! How much of the Milk Thistle> > Capsules should I take? Do you get them at a> health> > food store? That's really good to know that the sq> > methotrexate bypasses the liver. Last time I was> in> > the hospital my heart rate would drop down to 40> at> > night, even if I was awake. They said that could> > suggest heart involvement with sarcoid. They did> an> > echo and didn't see any nodules. My EF was only> 53%> > though. How did you know it got to your heart?> What> > symptoms did you have?> > Thanks so much!> > Cathy> > > > tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com> wrote:> > Cathy, Welcome to the group I'm wish> > you didn't need to learn about this disease. ...> > I see where they have started you on> > Plaquenil--this is good. I know it helped me with> > the brain fog part, and the systemic body pain. It> > also helps with my lung sarc.> > It's interesting about the Alpha 1 trypshin or> > whatever it's called. The post I sent on to the> > group from the Arthritis Foundation addresses that> > issue in asthma patients.> > Methotrexate can be given by injection - Subq. It> > totally bypasses the liver that way, and still> works> > well. Also-- whenever liver health is an> issue---GET> > YOURSELF ON MILK THISTLE CAPSULES! It is a natural> > liver detox, and works wonders. I found out about> > it a few years ago from a friend that had had> > childhood Hodgkins Lymphoma back in the 60's. She> > was one of the first 8 kids that got radiation and> > they used such high doses-- that even tho the> > Hodgkins was cured-- the secondary scarring of her> > organs, heart liver lungs esophagus, stomach--> > generally killed all these kids as young adults.> At> > the age of 49-- she was the oldest survivor of> > Hodgkins from that era. > > She ended up developing such scarring around the> > peri-cardial sac around her heart-- that they had> to> > remove it when she was 46. The docs at Stanford> > told her 2 days, 2 weeks, 2 months-- tops. She> > lived another 3 yrs.> > Her liver was in serious shape, and had developed> > cancer-- her oncologist got her on Milk Thistle,> and> > when she died, her liver was in wonderful> > condition-- the cancer had gone to her bones... He> > did tell her that cirrhosis and liver cancer along> > with Hepatitis all respond well to Milk Thistle. I> > know that I use it and even on MTX, Plaquenil and> > Remicade-- my liver enzymes are all normal now! > > You asked if this is a slow progression-- fatigue,> > brain fog, extremity weakness-- it seems to> progress> > that way in many of us. What I have noticed since> I> > started on the Remicade over 15 months ago is that> > my bone pain, the joint and ligament pain, the> brain> > fog-- are all much better. I have started having> > problems with my lungs and heart lately- and am> > developing more pulmonary fibrosis with pulmonary> > hypertension-- so it isn't stopping that part. I> > don't know what the answer is -- and after living> > with this for the last 17 yrs--- I'm not> frantically> > searching -- > > The exhaustion is worse-- but I suspect it's the> > PPH more than the sarc. (Actually it's Secondary> > Pulm Hypertension._ > > One thing that is becoming apparent in the studies> > is that somehow we came into contact with a virus> or> > bacterial infection that turned on our immune> > system, and now our bodies can't clear out the> TNF-b> > cells (we produce too many) and they build on the> > other immune cells forming the granulomas. This is> > why they are looking at TNF-B blockers-- the> > "Biologicals" BRM's. Biological Response> > Modifiers. > === message truncated === Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 No problem - we're here to answer questions-- and share what we've learned. So ask away, and if I have the energy-- I'll be answering here-- if it's one of the those days-- I may very well refer you to our LINKS and ARCHIVES. It's a wonderful backup when we're wiped out, and since I've played most of the weekend, I took a wirewrap jewelry making class yesterday, and then did some shopping with my hubby today- I'm looking forward to having some downtime tomorrow. LOL! And btw-- remember to " pace " yourself... t --- Cathy Borden wrote: > Thank you. I haven't looked at the archives yet. > Guess I should before I ask more questions. Sorry. I > do drink a few cups of coffee a day and I always > seem thirsty. I will switch to decaf right away. > Thanks again! > > tracie feldhaus wrote: > MSM is a natural mineral that we have engineered out > of our soil, our food. If you look in the ARCHIVES-- > you can search by MSM-- and you'll find a bunch of > posts I've done on it. Also at PUREMSM.COM they > explain what it does. > Part of the constant inflammation is that we run a > constant- low grade fever. This is one of the most > common symptom-- and it has a tendency to keep you > borderline dehydrated. Which adds to the exhaustion > factor. > If you are one of those that enjoys coffee, teas, > alcholol or sodas-- cut them out. They all add to > dehydration. You can switch to decaf choices, and > that might help. > > --- Cathy Borden wrote: > > > Thanks Tracie, > > We are going to go get some Friday (payday). What > > is MSM? I have heard other people talk about it. I > > ask about the heart thing also because a few years > > ago (before I knew I had sarcoidosis in my > > lungs--they just said I kept having recurring > > pneumonia for about 4 years for an unknown reason) > I > > had severe chest pain and left arm pain and it > > appeared I was having a heart attack. The squad > and > > the ER thought I was and I was admitted for 3 > days. > > They didn't find any blockages in the arteries > like > > they usually do in heart patients so they sent me > > home saying that it must have been coronary artery > > spasms. All of the unexplained symptoms in my past > > are starting to come together and make sense. I am > > just wondering if the cardiac stuff could be > related > > too. I am going to go have an eval by a > cardiologist > > whenever I get the energy up. I don't know what > > normal fatigue is for sarcoidosis. I used to be > able > > to get up and keep going until about 7 or 8 pm > last > > summer before I got too > > tired to function, then it moved up to about 3 or > > 4:00. Then in Sept I was in the hospital for 9 > days > > on IV decacron and got stronger. Now I am to the > > point where I can't make it though the day without > a > > nap by about noon or 1pm and am still exhausted > most > > of the rest of the day. I noticed I sweat a lot > (not > > normal for me). Today at church even standing to > > sing made me weak and sweat. I sat down and > realized > > that I think i am sweating so much because I am > > getting exhausted doing simple things (like most > > people sweat when they do something physically > > strenuous). Is that normal fatigue for sarcoid? > > Isn't it amazing that other countries are so far > > ahead of us in some things? My son used to be sick > > with a rare metabolic disease and the doctors her > > were consulting doctors in Denmark because they > are > > further ahead of the US in metabolic diseases. > > Thanks so much for taking the time to answer my > > questions. I have had so many questions for a year > > now and knew noone who had any answers. I am more > > thankful for answers than I can say. The doctors > > don't even seem to know a lot about it. You guys > > have had more info than I got from any doctors so > > far. Thank you so much! > > I will keep you in my prayers Thursday! > > Thanks again! > > Cathy > > > > tracie feldhaus wrote: > > Cathy, Typical dose is 70-210 milligrams > > of capsules > > containing the active ingredient of MT--silymarin > 3x > > daily, or 1/4 to 1tsp of MT tincture 3x daily. > (THE > > HERBAL DRUGSTORE- BY White MD.) > > You cannot overdose== and there are no drug > > interactions. > > Health Food Stores are a good place to find it. > > For the " inside " the bone pain--- use MSM Powder-- > I > > get mine thru PUREMSM.COM. Since I started using > it, > > I have not needed my pain meds. > > As for the heart-- I've been having more chest and > > left arm pain, and was fighting extreme (way over > > normal extreme for us) fatigue when I'd try to do > > anything-- even to walk across a parking lot to go > > do > > the grocery shopping. I have Stage 4 Pulm Sarc-- > and > > it's only been since I got on the Remicade that I > > was > > able to go without O2 for the last 18 months. But > > this winter has brought back this problem-- so I'm > > sure that next week they'll put me back on the O2. > > We found it when they did an echocardiogram-- and > it > > showed moderate pulm hypertension. This week on > > Thurs > > I do a cardiolyte stress test and nuclear scan-- > to > > see if we can get a better idea of what is > > happening-- and I suspect they'll want to do a > right > > heart cath to see exactly what the pressures are. > > The Rheumi in Sac did tell me there are plenty of > > new > > meds to treat PH-- and that they are working > well-- > > so > > I'm hopeful we can get the progression stopped. > > In the meantime-- no aerobics! My heartrate > resting > > is already at 90-- so I hit my acceptable high in > a > > couple of minutes -- and they only let me get up > to > > 105 beats per minute--- > > Actually, even before the chest pain incident-- I > > had > > a EEG-- brain wave study, and they thought that it > > showed a " Right Bundle Branch Block. " The docs > blew > > it off-- -until you go into total failure- it's > not > > a > > problem-- > > But with cardiac sarc-- a study in China showed > that > > out of 93 patients that died of sarc > complications-- > > 76 of them had undiagnosed RBBB. Hmmm, they catch > > alot of patients over there with cardiac sarc-- > the > > good old USA is once again hiding from the eight > > ball... > > > > Sincerely, > > Tracie > > NS Co-owner/moderator > > > > --- Cathy Borden wrote: > > > > > Tracie, > > > Thank you so much! How much of the Milk Thistle > > > Capsules should I take? Do you get them at a > > health > > > food store? That's really good to know that the > sq > > > methotrexate bypasses the liver. Last time I was > > in > > > the hospital my heart rate would drop down to 40 > > at > > > night, even if I was awake. They said that could > > > suggest heart involvement with sarcoid. They did > > an > > > echo and didn't see any nodules. My EF was only > > 53% > > > though. How did you know it got to your heart? > > What > > > symptoms did you have? > > > Thanks so much! > > > Cathy > > > > > > tracie feldhaus wrote: > > > Cathy, Welcome to the group I'm wish > > > you didn't need to learn about this disease. ... > > > I see where they have started you on > > > Plaquenil--this is good. I know it helped me > with > > > the brain fog part, and the systemic body pain. > It > > > also helps with my lung sarc. > > > It's interesting about the Alpha 1 trypshin or > > > whatever it's called. The post I sent on to the > > > group from the Arthritis Foundation addresses > that > > > issue in asthma patients. > > > Methotrexate can be given by injection - Subq. > It > > > totally bypasses the liver that way, and still > === message truncated === Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 No problem - we're here to answer questions-- and share what we've learned. So ask away, and if I have the energy-- I'll be answering here-- if it's one of the those days-- I may very well refer you to our LINKS and ARCHIVES. It's a wonderful backup when we're wiped out, and since I've played most of the weekend, I took a wirewrap jewelry making class yesterday, and then did some shopping with my hubby today- I'm looking forward to having some downtime tomorrow. LOL! And btw-- remember to " pace " yourself... t --- Cathy Borden wrote: > Thank you. I haven't looked at the archives yet. > Guess I should before I ask more questions. Sorry. I > do drink a few cups of coffee a day and I always > seem thirsty. I will switch to decaf right away. > Thanks again! > > tracie feldhaus wrote: > MSM is a natural mineral that we have engineered out > of our soil, our food. If you look in the ARCHIVES-- > you can search by MSM-- and you'll find a bunch of > posts I've done on it. Also at PUREMSM.COM they > explain what it does. > Part of the constant inflammation is that we run a > constant- low grade fever. This is one of the most > common symptom-- and it has a tendency to keep you > borderline dehydrated. Which adds to the exhaustion > factor. > If you are one of those that enjoys coffee, teas, > alcholol or sodas-- cut them out. They all add to > dehydration. You can switch to decaf choices, and > that might help. > > --- Cathy Borden wrote: > > > Thanks Tracie, > > We are going to go get some Friday (payday). What > > is MSM? I have heard other people talk about it. I > > ask about the heart thing also because a few years > > ago (before I knew I had sarcoidosis in my > > lungs--they just said I kept having recurring > > pneumonia for about 4 years for an unknown reason) > I > > had severe chest pain and left arm pain and it > > appeared I was having a heart attack. The squad > and > > the ER thought I was and I was admitted for 3 > days. > > They didn't find any blockages in the arteries > like > > they usually do in heart patients so they sent me > > home saying that it must have been coronary artery > > spasms. All of the unexplained symptoms in my past > > are starting to come together and make sense. I am > > just wondering if the cardiac stuff could be > related > > too. I am going to go have an eval by a > cardiologist > > whenever I get the energy up. I don't know what > > normal fatigue is for sarcoidosis. I used to be > able > > to get up and keep going until about 7 or 8 pm > last > > summer before I got too > > tired to function, then it moved up to about 3 or > > 4:00. Then in Sept I was in the hospital for 9 > days > > on IV decacron and got stronger. Now I am to the > > point where I can't make it though the day without > a > > nap by about noon or 1pm and am still exhausted > most > > of the rest of the day. I noticed I sweat a lot > (not > > normal for me). Today at church even standing to > > sing made me weak and sweat. I sat down and > realized > > that I think i am sweating so much because I am > > getting exhausted doing simple things (like most > > people sweat when they do something physically > > strenuous). Is that normal fatigue for sarcoid? > > Isn't it amazing that other countries are so far > > ahead of us in some things? My son used to be sick > > with a rare metabolic disease and the doctors her > > were consulting doctors in Denmark because they > are > > further ahead of the US in metabolic diseases. > > Thanks so much for taking the time to answer my > > questions. I have had so many questions for a year > > now and knew noone who had any answers. I am more > > thankful for answers than I can say. The doctors > > don't even seem to know a lot about it. You guys > > have had more info than I got from any doctors so > > far. Thank you so much! > > I will keep you in my prayers Thursday! > > Thanks again! > > Cathy > > > > tracie feldhaus wrote: > > Cathy, Typical dose is 70-210 milligrams > > of capsules > > containing the active ingredient of MT--silymarin > 3x > > daily, or 1/4 to 1tsp of MT tincture 3x daily. > (THE > > HERBAL DRUGSTORE- BY White MD.) > > You cannot overdose== and there are no drug > > interactions. > > Health Food Stores are a good place to find it. > > For the " inside " the bone pain--- use MSM Powder-- > I > > get mine thru PUREMSM.COM. Since I started using > it, > > I have not needed my pain meds. > > As for the heart-- I've been having more chest and > > left arm pain, and was fighting extreme (way over > > normal extreme for us) fatigue when I'd try to do > > anything-- even to walk across a parking lot to go > > do > > the grocery shopping. I have Stage 4 Pulm Sarc-- > and > > it's only been since I got on the Remicade that I > > was > > able to go without O2 for the last 18 months. But > > this winter has brought back this problem-- so I'm > > sure that next week they'll put me back on the O2. > > We found it when they did an echocardiogram-- and > it > > showed moderate pulm hypertension. This week on > > Thurs > > I do a cardiolyte stress test and nuclear scan-- > to > > see if we can get a better idea of what is > > happening-- and I suspect they'll want to do a > right > > heart cath to see exactly what the pressures are. > > The Rheumi in Sac did tell me there are plenty of > > new > > meds to treat PH-- and that they are working > well-- > > so > > I'm hopeful we can get the progression stopped. > > In the meantime-- no aerobics! My heartrate > resting > > is already at 90-- so I hit my acceptable high in > a > > couple of minutes -- and they only let me get up > to > > 105 beats per minute--- > > Actually, even before the chest pain incident-- I > > had > > a EEG-- brain wave study, and they thought that it > > showed a " Right Bundle Branch Block. " The docs > blew > > it off-- -until you go into total failure- it's > not > > a > > problem-- > > But with cardiac sarc-- a study in China showed > that > > out of 93 patients that died of sarc > complications-- > > 76 of them had undiagnosed RBBB. Hmmm, they catch > > alot of patients over there with cardiac sarc-- > the > > good old USA is once again hiding from the eight > > ball... > > > > Sincerely, > > Tracie > > NS Co-owner/moderator > > > > --- Cathy Borden wrote: > > > > > Tracie, > > > Thank you so much! How much of the Milk Thistle > > > Capsules should I take? Do you get them at a > > health > > > food store? That's really good to know that the > sq > > > methotrexate bypasses the liver. Last time I was > > in > > > the hospital my heart rate would drop down to 40 > > at > > > night, even if I was awake. They said that could > > > suggest heart involvement with sarcoid. They did > > an > > > echo and didn't see any nodules. My EF was only > > 53% > > > though. How did you know it got to your heart? > > What > > > symptoms did you have? > > > Thanks so much! > > > Cathy > > > > > > tracie feldhaus wrote: > > > Cathy, Welcome to the group I'm wish > > > you didn't need to learn about this disease. ... > > > I see where they have started you on > > > Plaquenil--this is good. I know it helped me > with > > > the brain fog part, and the systemic body pain. > It > > > also helps with my lung sarc. > > > It's interesting about the Alpha 1 trypshin or > > > whatever it's called. The post I sent on to the > > > group from the Arthritis Foundation addresses > that > > > issue in asthma patients. > > > Methotrexate can be given by injection - Subq. > It > > > totally bypasses the liver that way, and still > === message truncated === Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 The super extreme fatigue your describing sounds like the heart sarc. Sarc already makes you feel like dirt, but when it starts playing with your heart you'll get to the point you can't stand up or walk hardly at all, and you will be more tired than you ever thought was possible. ConnieCathy Borden wrote: Thanks Tracie, We are going to go get some Friday (payday). What is MSM? I have heard other people talk about it. I ask about the heart thing also because a few years ago (before I knew I had sarcoidosis in my lungs--they just said I kept having recurring pneumonia for about 4 years for an unknown reason) I had severe chest pain and left arm pain and it appeared I was having a heart attack. The squad and the ER thought I was and I was admitted for 3 days. They didn't find any blockages in the arteries like they usually do in heart patients so they sent me home saying that it must have been coronary artery spasms. All of the unexplained symptoms in my past are starting to come together and make sense. I am just wondering if the cardiac stuff could be related too. I am going to go have an eval by a cardiologist whenever I get the energy up. I don't know what normal fatigue is for sarcoidosis. I used to be able to get up and keep going until about 7 or 8 pm last summer before I got too tired to function, then it moved up to about 3 or 4:00. Then in Sept I was in the hospital for 9 days on IV decacron and got stronger. Now I am to the point where I can't make it though the day without a nap by about noon or 1pm and am still exhausted most of the rest of the day. I noticed I sweat a lot (not normal for me). Today at church even standing to sing made me weak and sweat. I sat down and realized that I think i am sweating so much because I am getting exhausted doing simple things (like most people sweat when they do something physically strenuous). Is that normal fatigue for sarcoid? Isn't it amazing that other countries are so far ahead of us in some things? My son used to be sick with a rare metabolic disease and the doctors her were consulting doctors in Denmark because they are further ahead of the US in metabolic diseases. Thanks so much for taking the time to answer my questions. I have had so many questions for a year now and knew noone who had any answers. I am more thankful for answers than I can say. The doctors don't even seem to know a lot about it. You guys have had more info than I got from any doctors so far. Thank you so much! I will keep you in my prayers Thursday! Thanks again! Cathytracie feldhaus <tiodaat (AT) att (DOT) net> wrote: Cathy, Typical dose is 70-210 milligrams of capsulescontaining the active ingredient of MT--silymarin 3xdaily, or 1/4 to 1tsp of MT tincture 3x daily. (THEHERBAL DRUGSTORE- BY White MD.)You cannot overdose== and there are no druginteractions. Health Food Stores are a good place to find it.For the "inside" the bone pain--- use MSM Powder-- Iget mine thru PUREMSM.COM. Since I started using it,I have not needed my pain meds.As for the heart-- I've been having more chest andleft arm pain, and was fighting extreme (way overnormal extreme for us) fatigue when I'd try to doanything-- even to walk across a parking lot to go dothe grocery shopping. I have Stage 4 Pulm Sarc-- andit's only been since I got on the Remicade that I wasable to go without O2 for the last 18 months. Butthis winter has brought back this problem-- so I'msure that next week they'll put me back on the O2.We found it when they did an echocardiogram-- and itshowed moderate pulm hypertension. This week on ThursI do a cardiolyte stress test and nuclear scan-- tosee if we can get a better idea of what ishappening-- and I suspect they'll want to do a rightheart cath to see exactly what the pressures are.The Rheumi in Sac did tell me there are plenty of newmeds to treat PH-- and that they are working well-- soI'm hopeful we can get the progression stopped. In the meantime-- no aerobics! My heartrate restingis already at 90-- so I hit my acceptable high in acouple of minutes -- and they only let me get up to105 beats per minute--- Actually, even before the chest pain incident-- I hada EEG-- brain wave study, and they thought that itshowed a "Right Bundle Branch Block." The docs blewit off-- -until you go into total failure- it's not aproblem-- But with cardiac sarc-- a study in China showed thatout of 93 patients that died of sarc complications--76 of them had undiagnosed RBBB. Hmmm, they catchalot of patients over there with cardiac sarc-- thegood old USA is once again hiding from the eightball...Sincerely,TracieNS Co-owner/moderator--- Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote:> Tracie,> Thank you so much! How much of the Milk Thistle> Capsules should I take? Do you get them at a health> food store? That's really good to know that the sq> methotrexate bypasses the liver. Last time I was in> the hospital my heart rate would drop down to 40 at> night, even if I was awake. They said that could> suggest heart involvement with sarcoid. They did an> echo and didn't see any nodules. My EF was only 53%> though. How did you know it got to your heart? What> symptoms did you have?> Thanks so much!> Cathy> > tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com> wrote:> Cathy, Welcome to the group I'm wish> you didn't need to learn about this disease. ...> I see where they have started you on> Plaquenil--this is good. I know it helped me with> the brain fog part, and the systemic body pain. It> also helps with my lung sarc.> It's interesting about the Alpha 1 trypshin or> whatever it's called. The post I sent on to the> group from the Arthritis Foundation addresses that> issue in asthma patients.> Methotrexate can be given by injection - Subq. It> totally bypasses the liver that way, and still works> well. Also-- whenever liver health is an issue---GET> YOURSELF ON MILK THISTLE CAPSULES! It is a natural> liver detox, and works wonders. I found out about> it a few years ago from a friend that had had> childhood Hodgkins Lymphoma back in the 60's. She> was one of the first 8 kids that got radiation and> they used such high doses-- that even tho the> Hodgkins was cured-- the secondary scarring of her> organs, heart liver lungs esophagus, stomach--> generally killed all these kids as young adults. At> the age of 49-- she was the oldest survivor of> Hodgkins from that era. > She ended up developing such scarring around the> peri-cardial sac around her heart-- that they had to> remove it when she was 46. The docs at Stanford> told her 2 days, 2 weeks, 2 months-- tops. She> lived another 3 yrs.> Her liver was in serious shape, and had developed> cancer-- her oncologist got her on Milk Thistle, and> when she died, her liver was in wonderful> condition-- the cancer had gone to her bones... He> did tell her that cirrhosis and liver cancer along> with Hepatitis all respond well to Milk Thistle. I> know that I use it and even on MTX, Plaquenil and> Remicade-- my liver enzymes are all normal now! > You asked if this is a slow progression-- fatigue,> brain fog, extremity weakness-- it seems to progress> that way in many of us. What I have noticed since I> started on the Remicade over 15 months ago is that> my bone pain, the joint and ligament pain, the brain> fog-- are all much better. I have started having> problems with my lungs and heart lately- and am> developing more pulmonary fibrosis with pulmonary> hypertension-- so it isn't stopping that part. I> don't know what the answer is -- and after living> with this for the last 17 yrs--- I'm not frantically> searching -- > The exhaustion is worse-- but I suspect it's the> PPH more than the sarc. (Actually it's Secondary> Pulm Hypertension._ > One thing that is becoming apparent in the studies> is that somehow we came into contact with a virus or> bacterial infection that turned on our immune> system, and now our bodies can't clear out the TNF-b> cells (we produce too many) and they build on the> other immune cells forming the granulomas. This is> why they are looking at TNF-B blockers-- the> "Biologicals" BRM's. Biological Response> Modifiers. > Here is a great site to check out for explanation> of the DMARDS and BRMS--www.arthritis.org. > Use a 2007 or 2006 Prescription drug issue and you> will be amazed at the choices we have.> > I do hope this helps,> Sincerely,> Tracie > NSCo-owner/moderator> > Re: NS dx> > Thank you so much for your reply. I have had> neuro symptoms for a year now and it seems like over> all my condition declines, but it's like a roller> coaster, some days I feel like I am getting better> (like when I start prednisone again---I hate> prednisone though) and then I am back to bad or> worse. Is that the way it goes? Just a downward> progressive spiral? I am a nurse to. I never dreamed> I would end up with something like this. I read it> hits healthcare workers frequently. I am weaning off> of prednisone again,so I feel rotten. The Plaquenil> is helping with the pain, but the fatigue is> horrible. The weakness and numbness seem to keep> getting worse. They are hesitant to use methotrexate> because they also found I have a liver disease that> I never heard of before (Alpha 1 anti trypsin> deficiency-sp? ) that means my liver's not producing> the protien needed in my lungs that protect against> an immune response (great thing to have in> combination with sarcoid huh?). Anyway, I> guess the liver makes the protien the wrong shape> and it clogs up the liver, because it can't leave> the liver and leaves your lungs unprotected,> predisposed to severe emphysema at an early age. I> just rec'd that dx, so have a lot to learn about it.> thanks for your time and info! It is so great to> finally have someone to talk to who understands.> Thanks so much!!!!!!> > Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I> was dx with Sarcoid almost 13 years ago, NS 5 years> ago, I have had just about all your symptoms, right> now I am just slowly losing the use of my left side> and legs, On Plaquanil, Methotrexate, and many other> drugs to treat symptoms, this week I have a hearing> with the insurance company to appeal their denial on> Remicade which is the drug I know need. I left my> job as an RN, Labor and delivery nurse almost 5> years ago, hardly seems possible, I keep my self> busy with an in home small business or I would go> crazy, or maybe already there. > There are many of us here that have been through all> this, and much more, this is a wonderful supportive> group, with very knowledgeable moderators and we are> blessed to have them. Many of them are sick right> now, but still check in when they can. you have> found a good home here, I hope you find your answers> here, and the support you need. Ask away, and whine> when needed, we all do. > God Bless you, Marla > > -- > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all> with Yahoo! Mobile. Try it now. > > > > > > > > > > > ---------------------------------> Looking for last minute shopping deals? Find them> fast with Yahoo! Search. Never miss a thing. Make Yahoo your homepage. You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 The super extreme fatigue your describing sounds like the heart sarc. Sarc already makes you feel like dirt, but when it starts playing with your heart you'll get to the point you can't stand up or walk hardly at all, and you will be more tired than you ever thought was possible. ConnieCathy Borden wrote: Thanks Tracie, We are going to go get some Friday (payday). What is MSM? I have heard other people talk about it. I ask about the heart thing also because a few years ago (before I knew I had sarcoidosis in my lungs--they just said I kept having recurring pneumonia for about 4 years for an unknown reason) I had severe chest pain and left arm pain and it appeared I was having a heart attack. The squad and the ER thought I was and I was admitted for 3 days. They didn't find any blockages in the arteries like they usually do in heart patients so they sent me home saying that it must have been coronary artery spasms. All of the unexplained symptoms in my past are starting to come together and make sense. I am just wondering if the cardiac stuff could be related too. I am going to go have an eval by a cardiologist whenever I get the energy up. I don't know what normal fatigue is for sarcoidosis. I used to be able to get up and keep going until about 7 or 8 pm last summer before I got too tired to function, then it moved up to about 3 or 4:00. Then in Sept I was in the hospital for 9 days on IV decacron and got stronger. Now I am to the point where I can't make it though the day without a nap by about noon or 1pm and am still exhausted most of the rest of the day. I noticed I sweat a lot (not normal for me). Today at church even standing to sing made me weak and sweat. I sat down and realized that I think i am sweating so much because I am getting exhausted doing simple things (like most people sweat when they do something physically strenuous). Is that normal fatigue for sarcoid? Isn't it amazing that other countries are so far ahead of us in some things? My son used to be sick with a rare metabolic disease and the doctors her were consulting doctors in Denmark because they are further ahead of the US in metabolic diseases. Thanks so much for taking the time to answer my questions. I have had so many questions for a year now and knew noone who had any answers. I am more thankful for answers than I can say. The doctors don't even seem to know a lot about it. You guys have had more info than I got from any doctors so far. Thank you so much! I will keep you in my prayers Thursday! Thanks again! Cathytracie feldhaus <tiodaat (AT) att (DOT) net> wrote: Cathy, Typical dose is 70-210 milligrams of capsulescontaining the active ingredient of MT--silymarin 3xdaily, or 1/4 to 1tsp of MT tincture 3x daily. (THEHERBAL DRUGSTORE- BY White MD.)You cannot overdose== and there are no druginteractions. Health Food Stores are a good place to find it.For the "inside" the bone pain--- use MSM Powder-- Iget mine thru PUREMSM.COM. Since I started using it,I have not needed my pain meds.As for the heart-- I've been having more chest andleft arm pain, and was fighting extreme (way overnormal extreme for us) fatigue when I'd try to doanything-- even to walk across a parking lot to go dothe grocery shopping. I have Stage 4 Pulm Sarc-- andit's only been since I got on the Remicade that I wasable to go without O2 for the last 18 months. Butthis winter has brought back this problem-- so I'msure that next week they'll put me back on the O2.We found it when they did an echocardiogram-- and itshowed moderate pulm hypertension. This week on ThursI do a cardiolyte stress test and nuclear scan-- tosee if we can get a better idea of what ishappening-- and I suspect they'll want to do a rightheart cath to see exactly what the pressures are.The Rheumi in Sac did tell me there are plenty of newmeds to treat PH-- and that they are working well-- soI'm hopeful we can get the progression stopped. In the meantime-- no aerobics! My heartrate restingis already at 90-- so I hit my acceptable high in acouple of minutes -- and they only let me get up to105 beats per minute--- Actually, even before the chest pain incident-- I hada EEG-- brain wave study, and they thought that itshowed a "Right Bundle Branch Block." The docs blewit off-- -until you go into total failure- it's not aproblem-- But with cardiac sarc-- a study in China showed thatout of 93 patients that died of sarc complications--76 of them had undiagnosed RBBB. Hmmm, they catchalot of patients over there with cardiac sarc-- thegood old USA is once again hiding from the eightball...Sincerely,TracieNS Co-owner/moderator--- Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote:> Tracie,> Thank you so much! How much of the Milk Thistle> Capsules should I take? Do you get them at a health> food store? That's really good to know that the sq> methotrexate bypasses the liver. Last time I was in> the hospital my heart rate would drop down to 40 at> night, even if I was awake. They said that could> suggest heart involvement with sarcoid. They did an> echo and didn't see any nodules. My EF was only 53%> though. How did you know it got to your heart? What> symptoms did you have?> Thanks so much!> Cathy> > tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com> wrote:> Cathy, Welcome to the group I'm wish> you didn't need to learn about this disease. ...> I see where they have started you on> Plaquenil--this is good. I know it helped me with> the brain fog part, and the systemic body pain. It> also helps with my lung sarc.> It's interesting about the Alpha 1 trypshin or> whatever it's called. The post I sent on to the> group from the Arthritis Foundation addresses that> issue in asthma patients.> Methotrexate can be given by injection - Subq. It> totally bypasses the liver that way, and still works> well. Also-- whenever liver health is an issue---GET> YOURSELF ON MILK THISTLE CAPSULES! It is a natural> liver detox, and works wonders. I found out about> it a few years ago from a friend that had had> childhood Hodgkins Lymphoma back in the 60's. She> was one of the first 8 kids that got radiation and> they used such high doses-- that even tho the> Hodgkins was cured-- the secondary scarring of her> organs, heart liver lungs esophagus, stomach--> generally killed all these kids as young adults. At> the age of 49-- she was the oldest survivor of> Hodgkins from that era. > She ended up developing such scarring around the> peri-cardial sac around her heart-- that they had to> remove it when she was 46. The docs at Stanford> told her 2 days, 2 weeks, 2 months-- tops. She> lived another 3 yrs.> Her liver was in serious shape, and had developed> cancer-- her oncologist got her on Milk Thistle, and> when she died, her liver was in wonderful> condition-- the cancer had gone to her bones... He> did tell her that cirrhosis and liver cancer along> with Hepatitis all respond well to Milk Thistle. I> know that I use it and even on MTX, Plaquenil and> Remicade-- my liver enzymes are all normal now! > You asked if this is a slow progression-- fatigue,> brain fog, extremity weakness-- it seems to progress> that way in many of us. What I have noticed since I> started on the Remicade over 15 months ago is that> my bone pain, the joint and ligament pain, the brain> fog-- are all much better. I have started having> problems with my lungs and heart lately- and am> developing more pulmonary fibrosis with pulmonary> hypertension-- so it isn't stopping that part. I> don't know what the answer is -- and after living> with this for the last 17 yrs--- I'm not frantically> searching -- > The exhaustion is worse-- but I suspect it's the> PPH more than the sarc. (Actually it's Secondary> Pulm Hypertension._ > One thing that is becoming apparent in the studies> is that somehow we came into contact with a virus or> bacterial infection that turned on our immune> system, and now our bodies can't clear out the TNF-b> cells (we produce too many) and they build on the> other immune cells forming the granulomas. This is> why they are looking at TNF-B blockers-- the> "Biologicals" BRM's. Biological Response> Modifiers. > Here is a great site to check out for explanation> of the DMARDS and BRMS--www.arthritis.org. > Use a 2007 or 2006 Prescription drug issue and you> will be amazed at the choices we have.> > I do hope this helps,> Sincerely,> Tracie > NSCo-owner/moderator> > Re: NS dx> > Thank you so much for your reply. I have had> neuro symptoms for a year now and it seems like over> all my condition declines, but it's like a roller> coaster, some days I feel like I am getting better> (like when I start prednisone again---I hate> prednisone though) and then I am back to bad or> worse. Is that the way it goes? Just a downward> progressive spiral? I am a nurse to. I never dreamed> I would end up with something like this. I read it> hits healthcare workers frequently. I am weaning off> of prednisone again,so I feel rotten. The Plaquenil> is helping with the pain, but the fatigue is> horrible. The weakness and numbness seem to keep> getting worse. They are hesitant to use methotrexate> because they also found I have a liver disease that> I never heard of before (Alpha 1 anti trypsin> deficiency-sp? ) that means my liver's not producing> the protien needed in my lungs that protect against> an immune response (great thing to have in> combination with sarcoid huh?). Anyway, I> guess the liver makes the protien the wrong shape> and it clogs up the liver, because it can't leave> the liver and leaves your lungs unprotected,> predisposed to severe emphysema at an early age. I> just rec'd that dx, so have a lot to learn about it.> thanks for your time and info! It is so great to> finally have someone to talk to who understands.> Thanks so much!!!!!!> > Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I> was dx with Sarcoid almost 13 years ago, NS 5 years> ago, I have had just about all your symptoms, right> now I am just slowly losing the use of my left side> and legs, On Plaquanil, Methotrexate, and many other> drugs to treat symptoms, this week I have a hearing> with the insurance company to appeal their denial on> Remicade which is the drug I know need. I left my> job as an RN, Labor and delivery nurse almost 5> years ago, hardly seems possible, I keep my self> busy with an in home small business or I would go> crazy, or maybe already there. > There are many of us here that have been through all> this, and much more, this is a wonderful supportive> group, with very knowledgeable moderators and we are> blessed to have them. Many of them are sick right> now, but still check in when they can. you have> found a good home here, I hope you find your answers> here, and the support you need. Ask away, and whine> when needed, we all do. > God Bless you, Marla > > -- > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all> with Yahoo! Mobile. Try it now. > > > > > > > > > > > ---------------------------------> Looking for last minute shopping deals? Find them> fast with Yahoo! Search. Never miss a thing. Make Yahoo your homepage. You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2008 Report Share Posted April 29, 2008 Hi Connie, thanks for your reply. I have been to tired to look at email for a long time so sorry I am late getting back with you. Did you just go to a regular cardiologist? Good news--I just got referred to a neuro-oncologist who supposedly has lots of sarc patients. I see him next week. (the neurologist I see now knows very little about sarc). I am hoping he truely does know a lot. I will ask him for a cardiology referral at the same hospital. Thanks for your help! I am also really encouraged to hear that life is survivable with cardiac sarc. I thought once it hit your heart that was it. That is what I have been so scared of since my kids are so young. I just read one of your emails to someone else about your cardiac symptoms and it sounds like me. When I was in the hospital last Sept. my heart rate kept dropping to 40 while I was awake. Earlier in the summer I had a halter monitor because my heart kept racing. A few months ago I was driving and blacked out. That was really scary. I stopped driving for a while. When it didn't happen again I started driving again when my kids need to go somewhere and there's noone to take them, but I really think I shouldn't. Thanks so much for the info. I am so glad you are doing well with your pacer! I have really been encouraged through your emails! CathyConnie Griffis wrote: The super extreme fatigue your describing sounds like the heart sarc. Sarc already makes you feel like dirt, but when it starts playing with your heart you'll get to the point you can't stand up or walk hardly at all, and you will be more tired than you ever thought was possible. ConnieCathy Borden <csamom3 (AT) yahoo (DOT) com> wrote: Thanks Tracie, We are going to go get some Friday (payday). What is MSM? I have heard other people talk about it. I ask about the heart thing also because a few years ago (before I knew I had sarcoidosis in my lungs--they just said I kept having recurring pneumonia for about 4 years for an unknown reason) I had severe chest pain and left arm pain and it appeared I was having a heart attack. The squad and the ER thought I was and I was admitted for 3 days. They didn't find any blockages in the arteries like they usually do in heart patients so they sent me home saying that it must have been coronary artery spasms. All of the unexplained symptoms in my past are starting to come together and make sense. I am just wondering if the cardiac stuff could be related too. I am going to go have an eval by a cardiologist whenever I get the energy up. I don't know what normal fatigue is for sarcoidosis. I used to be able to get up and keep going until about 7 or 8 pm last summer before I got too tired to function, then it moved up to about 3 or 4:00. Then in Sept I was in the hospital for 9 days on IV decacron and got stronger. Now I am to the point where I can't make it though the day without a nap by about noon or 1pm and am still exhausted most of the rest of the day. I noticed I sweat a lot (not normal for me). Today at church even standing to sing made me weak and sweat. I sat down and realized that I think i am sweating so much because I am getting exhausted doing simple things (like most people sweat when they do something physically strenuous). Is that normal fatigue for sarcoid? Isn't it amazing that other countries are so far ahead of us in some things? My son used to be sick with a rare metabolic disease and the doctors her were consulting doctors in Denmark because they are further ahead of the US in metabolic diseases. Thanks so much for taking the time to answer my questions. I have had so many questions for a year now and knew noone who had any answers. I am more thankful for answers than I can say. The doctors don't even seem to know a lot about it. You guys have had more info than I got from any doctors so far. Thank you so much! I will keep you in my prayers Thursday! Thanks again! Cathytracie feldhaus <tiodaat (AT) att (DOT) net> wrote: Cathy, Typical dose is 70-210 milligrams of capsulescontaining the active ingredient of MT--silymarin 3xdaily, or 1/4 to 1tsp of MT tincture 3x daily. (THEHERBAL DRUGSTORE- BY White MD.)You cannot overdose== and there are no druginteractions. Health Food Stores are a good place to find it.For the "inside" the bone pain--- use MSM Powder-- Iget mine thru PUREMSM.COM. Since I started using it,I have not needed my pain meds.As for the heart-- I've been having more chest andleft arm pain, and was fighting extreme (way overnormal extreme for us) fatigue when I'd try to doanything-- even to walk across a parking lot to go dothe grocery shopping. I have Stage 4 Pulm Sarc-- andit's only been since I got on the Remicade that I wasable to go without O2 for the last 18 months. Butthis winter has brought back this problem-- so I'msure that next week they'll put me back on the O2.We found it when they did an echocardiogram-- and itshowed moderate pulm hypertension. This week on ThursI do a cardiolyte stress test and nuclear scan-- tosee if we can get a better idea of what ishappening-- and I suspect they'll want to do a rightheart cath to see exactly what the pressures are.The Rheumi in Sac did tell me there are plenty of newmeds to treat PH-- and that they are working well-- soI'm hopeful we can get the progression stopped. In the meantime-- no aerobics! My heartrate restingis already at 90-- so I hit my acceptable high in acouple of minutes -- and they only let me get up to105 beats per minute--- Actually, even before the chest pain incident-- I hada EEG-- brain wave study, and they thought that itshowed a "Right Bundle Branch Block." The docs blewit off-- -until you go into total failure- it's not aproblem-- But with cardiac sarc-- a study in China showed thatout of 93 patients that died of sarc complications--76 of them had undiagnosed RBBB. Hmmm, they catchalot of patients over there with cardiac sarc-- thegood old USA is once again hiding from the eightball...Sincerely,TracieNS Co-owner/moderator--- Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote:> Tracie,> Thank you so much! How much of the Milk Thistle> Capsules should I take? Do you get them at a health> food store? That's really good to know that the sq> methotrexate bypasses the liver. Last time I was in> the hospital my heart rate would drop down to 40 at> night, even if I was awake. They said that could> suggest heart involvement with sarcoid. They did an> echo and didn't see any nodules. My EF was only 53%> though. How did you know it got to your heart? What> symptoms did you have?> Thanks so much!> Cathy> > tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com> wrote:> Cathy, Welcome to the group I'm wish> you didn't need to learn about this disease. ...> I see where they have started you on> Plaquenil--this is good. I know it helped me with> the brain fog part, and the systemic body pain. It> also helps with my lung sarc.> It's interesting about the Alpha 1 trypshin or> whatever it's called. The post I sent on to the> group from the Arthritis Foundation addresses that> issue in asthma patients.> Methotrexate can be given by injection - Subq. It> totally bypasses the liver that way, and still works> well. Also-- whenever liver health is an issue---GET> YOURSELF ON MILK THISTLE CAPSULES! It is a natural> liver detox, and works wonders. I found out about> it a few years ago from a friend that had had> childhood Hodgkins Lymphoma back in the 60's. She> was one of the first 8 kids that got radiation and> they used such high doses-- that even tho the> Hodgkins was cured-- the secondary scarring of her> organs, heart liver lungs esophagus, stomach--> generally killed all these kids as young adults. At> the age of 49-- she was the oldest survivor of> Hodgkins from that era. > She ended up developing such scarring around the> peri-cardial sac around her heart-- that they had to> remove it when she was 46. The docs at Stanford> told her 2 days, 2 weeks, 2 months-- tops. She> lived another 3 yrs.> Her liver was in serious shape, and had developed> cancer-- her oncologist got her on Milk Thistle, and> when she died, her liver was in wonderful> condition-- the cancer had gone to her bones... He> did tell her that cirrhosis and liver cancer along> with Hepatitis all respond well to Milk Thistle. I> know that I use it and even on MTX, Plaquenil and> Remicade-- my liver enzymes are all normal now! > You asked if this is a slow progression-- fatigue,> brain fog, extremity weakness-- it seems to progress> that way in many of us. What I have noticed since I> started on the Remicade over 15 months ago is that> my bone pain, the joint and ligament pain, the brain> fog-- are all much better. I have started having> problems with my lungs and heart lately- and am> developing more pulmonary fibrosis with pulmonary> hypertension-- so it isn't stopping that part. I> don't know what the answer is -- and after living> with this for the last 17 yrs--- I'm not frantically> searching -- > The exhaustion is worse-- but I suspect it's the> PPH more than the sarc. (Actually it's Secondary> Pulm Hypertension._ > One thing that is becoming apparent in the studies> is that somehow we came into contact with a virus or> bacterial infection that turned on our immune> system, and now our bodies can't clear out the TNF-b> cells (we produce too many) and they build on the> other immune cells forming the granulomas. This is> why they are looking at TNF-B blockers-- the> "Biologicals" BRM's. Biological Response> Modifiers. > Here is a great site to check out for explanation> of the DMARDS and BRMS--www.arthritis.org. > Use a 2007 or 2006 Prescription drug issue and you> will be amazed at the choices we have.> > I do hope this helps,> Sincerely,> Tracie > NSCo-owner/moderator> > Re: NS dx> > Thank you so much for your reply. I have had> neuro symptoms for a year now and it seems like over> all my condition declines, but it's like a roller> coaster, some days I feel like I am getting better> (like when I start prednisone again---I hate> prednisone though) and then I am back to bad or> worse. Is that the way it goes? Just a downward> progressive spiral? I am a nurse to. I never dreamed> I would end up with something like this. I read it> hits healthcare workers frequently. I am weaning off> of prednisone again,so I feel rotten. The Plaquenil> is helping with the pain, but the fatigue is> horrible. The weakness and numbness seem to keep> getting worse. They are hesitant to use methotrexate> because they also found I have a liver disease that> I never heard of before (Alpha 1 anti trypsin> deficiency-sp? ) that means my liver's not producing> the protien needed in my lungs that protect against> an immune response (great thing to have in> combination with sarcoid huh?). Anyway, I> guess the liver makes the protien the wrong shape> and it clogs up the liver, because it can't leave> the liver and leaves your lungs unprotected,> predisposed to severe emphysema at an early age. I> just rec'd that dx, so have a lot to learn about it.> thanks for your time and info! It is so great to> finally have someone to talk to who understands.> Thanks so much!!!!!!> > Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I> was dx with Sarcoid almost 13 years ago, NS 5 years> ago, I have had just about all your symptoms, right> now I am just slowly losing the use of my left side> and legs, On Plaquanil, Methotrexate, and many other> drugs to treat symptoms, this week I have a hearing> with the insurance company to appeal their denial on> Remicade which is the drug I know need. I left my> job as an RN, Labor and delivery nurse almost 5> years ago, hardly seems possible, I keep my self> busy with an in home small business or I would go> crazy, or maybe already there. > There are many of us here that have been through all> this, and much more, this is a wonderful supportive> group, with very knowledgeable moderators and we are> blessed to have them. Many of them are sick right> now, but still check in when they can. you have> found a good home here, I hope you find your answers> here, and the support you need. Ask away, and whine> when needed, we all do. > God Bless you, Marla > > -- > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all> with Yahoo! Mobile. Try it now. > > > > > > > > > > > ---------------------------------> Looking for last minute shopping deals? Find them> fast with Yahoo! Search. Never miss a thing. Make Yahoo your homepage. You rock. 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Guest guest Posted April 29, 2008 Report Share Posted April 29, 2008 Hi Connie, thanks for your reply. I have been to tired to look at email for a long time so sorry I am late getting back with you. Did you just go to a regular cardiologist? Good news--I just got referred to a neuro-oncologist who supposedly has lots of sarc patients. I see him next week. (the neurologist I see now knows very little about sarc). I am hoping he truely does know a lot. I will ask him for a cardiology referral at the same hospital. Thanks for your help! I am also really encouraged to hear that life is survivable with cardiac sarc. I thought once it hit your heart that was it. That is what I have been so scared of since my kids are so young. I just read one of your emails to someone else about your cardiac symptoms and it sounds like me. When I was in the hospital last Sept. my heart rate kept dropping to 40 while I was awake. Earlier in the summer I had a halter monitor because my heart kept racing. A few months ago I was driving and blacked out. That was really scary. I stopped driving for a while. When it didn't happen again I started driving again when my kids need to go somewhere and there's noone to take them, but I really think I shouldn't. Thanks so much for the info. I am so glad you are doing well with your pacer! I have really been encouraged through your emails! CathyConnie Griffis wrote: The super extreme fatigue your describing sounds like the heart sarc. Sarc already makes you feel like dirt, but when it starts playing with your heart you'll get to the point you can't stand up or walk hardly at all, and you will be more tired than you ever thought was possible. ConnieCathy Borden <csamom3 (AT) yahoo (DOT) com> wrote: Thanks Tracie, We are going to go get some Friday (payday). What is MSM? I have heard other people talk about it. I ask about the heart thing also because a few years ago (before I knew I had sarcoidosis in my lungs--they just said I kept having recurring pneumonia for about 4 years for an unknown reason) I had severe chest pain and left arm pain and it appeared I was having a heart attack. The squad and the ER thought I was and I was admitted for 3 days. They didn't find any blockages in the arteries like they usually do in heart patients so they sent me home saying that it must have been coronary artery spasms. All of the unexplained symptoms in my past are starting to come together and make sense. I am just wondering if the cardiac stuff could be related too. I am going to go have an eval by a cardiologist whenever I get the energy up. I don't know what normal fatigue is for sarcoidosis. I used to be able to get up and keep going until about 7 or 8 pm last summer before I got too tired to function, then it moved up to about 3 or 4:00. Then in Sept I was in the hospital for 9 days on IV decacron and got stronger. Now I am to the point where I can't make it though the day without a nap by about noon or 1pm and am still exhausted most of the rest of the day. I noticed I sweat a lot (not normal for me). Today at church even standing to sing made me weak and sweat. I sat down and realized that I think i am sweating so much because I am getting exhausted doing simple things (like most people sweat when they do something physically strenuous). Is that normal fatigue for sarcoid? Isn't it amazing that other countries are so far ahead of us in some things? My son used to be sick with a rare metabolic disease and the doctors her were consulting doctors in Denmark because they are further ahead of the US in metabolic diseases. Thanks so much for taking the time to answer my questions. I have had so many questions for a year now and knew noone who had any answers. I am more thankful for answers than I can say. The doctors don't even seem to know a lot about it. You guys have had more info than I got from any doctors so far. Thank you so much! I will keep you in my prayers Thursday! Thanks again! Cathytracie feldhaus <tiodaat (AT) att (DOT) net> wrote: Cathy, Typical dose is 70-210 milligrams of capsulescontaining the active ingredient of MT--silymarin 3xdaily, or 1/4 to 1tsp of MT tincture 3x daily. (THEHERBAL DRUGSTORE- BY White MD.)You cannot overdose== and there are no druginteractions. Health Food Stores are a good place to find it.For the "inside" the bone pain--- use MSM Powder-- Iget mine thru PUREMSM.COM. Since I started using it,I have not needed my pain meds.As for the heart-- I've been having more chest andleft arm pain, and was fighting extreme (way overnormal extreme for us) fatigue when I'd try to doanything-- even to walk across a parking lot to go dothe grocery shopping. I have Stage 4 Pulm Sarc-- andit's only been since I got on the Remicade that I wasable to go without O2 for the last 18 months. Butthis winter has brought back this problem-- so I'msure that next week they'll put me back on the O2.We found it when they did an echocardiogram-- and itshowed moderate pulm hypertension. This week on ThursI do a cardiolyte stress test and nuclear scan-- tosee if we can get a better idea of what ishappening-- and I suspect they'll want to do a rightheart cath to see exactly what the pressures are.The Rheumi in Sac did tell me there are plenty of newmeds to treat PH-- and that they are working well-- soI'm hopeful we can get the progression stopped. In the meantime-- no aerobics! My heartrate restingis already at 90-- so I hit my acceptable high in acouple of minutes -- and they only let me get up to105 beats per minute--- Actually, even before the chest pain incident-- I hada EEG-- brain wave study, and they thought that itshowed a "Right Bundle Branch Block." The docs blewit off-- -until you go into total failure- it's not aproblem-- But with cardiac sarc-- a study in China showed thatout of 93 patients that died of sarc complications--76 of them had undiagnosed RBBB. Hmmm, they catchalot of patients over there with cardiac sarc-- thegood old USA is once again hiding from the eightball...Sincerely,TracieNS Co-owner/moderator--- Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote:> Tracie,> Thank you so much! How much of the Milk Thistle> Capsules should I take? Do you get them at a health> food store? That's really good to know that the sq> methotrexate bypasses the liver. Last time I was in> the hospital my heart rate would drop down to 40 at> night, even if I was awake. They said that could> suggest heart involvement with sarcoid. They did an> echo and didn't see any nodules. My EF was only 53%> though. How did you know it got to your heart? What> symptoms did you have?> Thanks so much!> Cathy> > tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com> wrote:> Cathy, Welcome to the group I'm wish> you didn't need to learn about this disease. ...> I see where they have started you on> Plaquenil--this is good. I know it helped me with> the brain fog part, and the systemic body pain. It> also helps with my lung sarc.> It's interesting about the Alpha 1 trypshin or> whatever it's called. The post I sent on to the> group from the Arthritis Foundation addresses that> issue in asthma patients.> Methotrexate can be given by injection - Subq. It> totally bypasses the liver that way, and still works> well. Also-- whenever liver health is an issue---GET> YOURSELF ON MILK THISTLE CAPSULES! It is a natural> liver detox, and works wonders. I found out about> it a few years ago from a friend that had had> childhood Hodgkins Lymphoma back in the 60's. She> was one of the first 8 kids that got radiation and> they used such high doses-- that even tho the> Hodgkins was cured-- the secondary scarring of her> organs, heart liver lungs esophagus, stomach--> generally killed all these kids as young adults. At> the age of 49-- she was the oldest survivor of> Hodgkins from that era. > She ended up developing such scarring around the> peri-cardial sac around her heart-- that they had to> remove it when she was 46. The docs at Stanford> told her 2 days, 2 weeks, 2 months-- tops. She> lived another 3 yrs.> Her liver was in serious shape, and had developed> cancer-- her oncologist got her on Milk Thistle, and> when she died, her liver was in wonderful> condition-- the cancer had gone to her bones... He> did tell her that cirrhosis and liver cancer along> with Hepatitis all respond well to Milk Thistle. I> know that I use it and even on MTX, Plaquenil and> Remicade-- my liver enzymes are all normal now! > You asked if this is a slow progression-- fatigue,> brain fog, extremity weakness-- it seems to progress> that way in many of us. What I have noticed since I> started on the Remicade over 15 months ago is that> my bone pain, the joint and ligament pain, the brain> fog-- are all much better. I have started having> problems with my lungs and heart lately- and am> developing more pulmonary fibrosis with pulmonary> hypertension-- so it isn't stopping that part. I> don't know what the answer is -- and after living> with this for the last 17 yrs--- I'm not frantically> searching -- > The exhaustion is worse-- but I suspect it's the> PPH more than the sarc. (Actually it's Secondary> Pulm Hypertension._ > One thing that is becoming apparent in the studies> is that somehow we came into contact with a virus or> bacterial infection that turned on our immune> system, and now our bodies can't clear out the TNF-b> cells (we produce too many) and they build on the> other immune cells forming the granulomas. This is> why they are looking at TNF-B blockers-- the> "Biologicals" BRM's. Biological Response> Modifiers. > Here is a great site to check out for explanation> of the DMARDS and BRMS--www.arthritis.org. > Use a 2007 or 2006 Prescription drug issue and you> will be amazed at the choices we have.> > I do hope this helps,> Sincerely,> Tracie > NSCo-owner/moderator> > Re: NS dx> > Thank you so much for your reply. I have had> neuro symptoms for a year now and it seems like over> all my condition declines, but it's like a roller> coaster, some days I feel like I am getting better> (like when I start prednisone again---I hate> prednisone though) and then I am back to bad or> worse. Is that the way it goes? Just a downward> progressive spiral? I am a nurse to. I never dreamed> I would end up with something like this. I read it> hits healthcare workers frequently. I am weaning off> of prednisone again,so I feel rotten. The Plaquenil> is helping with the pain, but the fatigue is> horrible. The weakness and numbness seem to keep> getting worse. They are hesitant to use methotrexate> because they also found I have a liver disease that> I never heard of before (Alpha 1 anti trypsin> deficiency-sp? ) that means my liver's not producing> the protien needed in my lungs that protect against> an immune response (great thing to have in> combination with sarcoid huh?). Anyway, I> guess the liver makes the protien the wrong shape> and it clogs up the liver, because it can't leave> the liver and leaves your lungs unprotected,> predisposed to severe emphysema at an early age. I> just rec'd that dx, so have a lot to learn about it.> thanks for your time and info! It is so great to> finally have someone to talk to who understands.> Thanks so much!!!!!!> > Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I> was dx with Sarcoid almost 13 years ago, NS 5 years> ago, I have had just about all your symptoms, right> now I am just slowly losing the use of my left side> and legs, On Plaquanil, Methotrexate, and many other> drugs to treat symptoms, this week I have a hearing> with the insurance company to appeal their denial on> Remicade which is the drug I know need. I left my> job as an RN, Labor and delivery nurse almost 5> years ago, hardly seems possible, I keep my self> busy with an in home small business or I would go> crazy, or maybe already there. > There are many of us here that have been through all> this, and much more, this is a wonderful supportive> group, with very knowledgeable moderators and we are> blessed to have them. Many of them are sick right> now, but still check in when they can. you have> found a good home here, I hope you find your answers> here, and the support you need. Ask away, and whine> when needed, we all do. > God Bless you, Marla > > -- > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all> with Yahoo! Mobile. Try it now. > > > > > > > > > > > ---------------------------------> Looking for last minute shopping deals? Find them> fast with Yahoo! Search. Never miss a thing. Make Yahoo your homepage. You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
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