Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Thanks for the reply. What about Florinef? Have you tried it? One thing I was reading about 's was that " Aldosterone regulates salt and water levels which affects blood volume and blood pressure " http://www.medhelp.org/www/nadf3.htm and that matches up with lots of my symptoms. Salt and water levels, which would be the constant thirst, plus I read a interview with Klimas on the DFW Cfids page where she said lots of PWC's she had seen were low on total blood volume, most people had 4.5 liters, she said the people she saw averaged a liter less, which is a hell of a lot, plus the other stuff I listed in my first post. So that looks worth checking into. I just wanted to see who has taken it and if it helped, since my thyroid is messed up but I can't tolerate the thyroid meds I've tried, etc. Thanks for the reply. > > > > > > Mark > > > > > > Let me say again that Vitamin D has significantly decreased > > inflammatory > > > spine pain for me. I am very thankful for that. > > > > > > mjh > > > > > > > > > Yes and no. It can play a role in reducing inflammation for some > > > conditions, but not necessarily others. I.e. you can't reduce the > > > inflammation in diseases like sarcoidosis with vitamin D, whereas > > > cortisone is effective. And vitamin D hasn't been shown to help > > > simple inflammation caused by common arthritis. And vitamin D of > > > course requires conversion to 1,25(OH)2D to be anti- inflammatory, > > and > > > that doesn't necessarily occur in all tissues. - Mark > > > > > > > > > > > > ************************************** See what's free at > > http://www.aol.com. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 I tired florinef briefly 10 years ago after I had positive tilttable test---I couldnt stand it as it made my heart rate go way up, very uncomfortable. and I just read some article (here, elsewhere?) about fluoride being bad for people, and that anything with " flor " in its title was related and bad, what the heck was it, I think a theory that fluoride in water a culprit for some with chem sensitivity or something. Anyway, maybe I couldnt tolerate the florinef because I have trouble tolerating most things because of detox deficiency. I think that licorice helps a little, maybe, and rebreathing, and lying flat for awhile. > > > > > > > > Mark > > > > > > > > Let me say again that Vitamin D has significantly decreased > > > inflammatory > > > > spine pain for me. I am very thankful for that. > > > > > > > > mjh > > > > > > > > > > > > Yes and no. It can play a role in reducing inflammation for > some > > > > conditions, but not necessarily others. I.e. you can't reduce > the > > > > inflammation in diseases like sarcoidosis with vitamin D, > whereas > > > > cortisone is effective. And vitamin D hasn't been shown to help > > > > simple inflammation caused by common arthritis. And vitamin D > of > > > > course requires conversion to 1,25(OH)2D to be anti- > inflammatory, > > > and > > > > that doesn't necessarily occur in all tissues. - Mark > > > > > > > > > > > > > > > > ************************************** See what's free at > > > http://www.aol.com. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 No I didn't use florinef. My blood pressure wasn't all that low.. and my electrolytes weren't out of whack. I mainly had symptoms of mild glucocorticoid deficiency, or as they say " poor adrenal reserve " . Thus the cortisol... > > > > > > > > Mark > > > > > > > > Let me say again that Vitamin D has significantly decreased > > > inflammatory > > > > spine pain for me. I am very thankful for that. > > > > > > > > mjh > > > > > > > > > > > > Yes and no. It can play a role in reducing inflammation for > some > > > > conditions, but not necessarily others. I.e. you can't reduce > the > > > > inflammation in diseases like sarcoidosis with vitamin D, > whereas > > > > cortisone is effective. And vitamin D hasn't been shown to help > > > > simple inflammation caused by common arthritis. And vitamin D > of > > > > course requires conversion to 1,25(OH)2D to be anti- > inflammatory, > > > and > > > > that doesn't necessarily occur in all tissues. - Mark > > > > > > > > > > > > > > > > ************************************** See what's free at > > > http://www.aol.com. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 Flouride is antagonistic to thyroid hormone, which could be what is causing the problem. Florinef is fludrocortisone, which is used to help if aldosterone is low. Aldosterone is a hormone produced by the adrenal cortex which, among other things, regulates sodium in the body, along with electrolites. Florinef is a very potent medicine and it has to be started low and moved up if needed, and should never be taken unless someone knows they are low in aldosterone to start with. Licorice keeps cortisol, another hormone produced in the adrenal cortex, in the body longer. If licorice helped you, maybe you were low in cortisol. Re: Cortisol/Florinef- who takes them? was: Vitamin D / Adrenal / Cortisone I tired florinef briefly 10 years ago after I had positive tilttable test---I couldnt stand it as it made my heart rate go way up, very uncomfortable. and I just read some article (here, elsewhere?) about fluoride being bad for people, and that anything with " flor " in its title was related and bad, what the heck was it, I think a theory that fluoride in water a culprit for some with chem sensitivity or something. Anyway, maybe I couldnt tolerate the florinef because I have trouble tolerating most things because of detox deficiency. I think that licorice helps a little, maybe, and rebreathing, and lying flat for awhile. > > > > > > > > Mark > > > > > > > > Let me say again that Vitamin D has significantly decreased > > > inflammatory > > > > spine pain for me. I am very thankful for that. > > > > > > > > mjh > > > > > > > > > > > > Yes and no. It can play a role in reducing inflammation for > some > > > > conditions, but not necessarily others. I.e. you can't reduce > the > > > > inflammation in diseases like sarcoidosis with vitamin D, > whereas > > > > cortisone is effective. And vitamin D hasn't been shown to help > > > > simple inflammation caused by common arthritis. And vitamin D > of > > > > course requires conversion to 1,25(OH)2D to be anti- > inflammatory, > > > and > > > > that doesn't necessarily occur in all tissues. - Mark > > > > > > > > > > > > > > > > ************************************** See what's free at > > > http://www.aol.com. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 you seem to know your science! thx. the licorice helping is subtle, still trying to discern that by going on and off and controlling other variables. That is interesting about florinef, so it seems just a positive tilttable test is not sufficient to hand that out....but they did. thankfully I didnt stay on it. > > > > > > > > > > Mark > > > > > > > > > > Let me say again that Vitamin D has significantly decreased > > > > inflammatory > > > > > spine pain for me. I am very thankful for that. > > > > > > > > > > mjh > > > > > > > > > > > > > > > Yes and no. It can play a role in reducing inflammation for > > some > > > > > conditions, but not necessarily others. I.e. you can't reduce > > the > > > > > inflammation in diseases like sarcoidosis with vitamin D, > > whereas > > > > > cortisone is effective. And vitamin D hasn't been shown to > help > > > > > simple inflammation caused by common arthritis. And vitamin > D > > of > > > > > course requires conversion to 1,25(OH)2D to be anti- > > inflammatory, > > > > and > > > > > that doesn't necessarily occur in all tissues. - Mark > > > > > > > > > > > > > > > > > > > > ************************************** See what's free at > > > > http://www.aol.com. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 There are a few things, mostly thyroid and adrenal, that I do know about. Some doctors prescribe florinef " for a trial " when they see symptoms which may be caused by low aldosterone. The problem with this is that for some people who do not have low aldosterone and take florinef, it can make them very, very sick, and it can take a while for them to get over it once they stop the florinef. Also, many doctors just give it to people and tell them to start with the maximum dosage, which can wreak havoc on the weak adrenals, which is why people need the florinef to start with. I don't know why doctors don't learn this. If I can learn it, they could too, if they wanted to. Florinef does seem to work wonders for people who need it, though. But for my money, I'd get the aldosterone test done first and if it comes out low (below mid-range, whatever the lab's ranges are), then go with the florinef. And you can get it done yourself, without a doctor, at Diredct Labs. Your doctor most likely was really trying to help you but was just not very familiar with florinef testing and dosing. Re: Cortisol/Florinef- who takes them? was: Vitamin D / Adrenal / Cortisone you seem to know your science! thx. the licorice helping is subtle, still trying to discern that by going on and off and controlling other variables. That is interesting about florinef, so it seems just a positive tilttable test is not sufficient to hand that out....but they did. thankfully I didnt stay on it. > > > > > > > > > > Mark > > > > > > > > > > Let me say again that Vitamin D has significantly decreased > > > > inflammatory > > > > > spine pain for me. I am very thankful for that. > > > > > > > > > > mjh > > > > > > > > > > > > > > > Yes and no. It can play a role in reducing inflammation for > > some > > > > > conditions, but not necessarily others. I.e. you can't reduce > > the > > > > > inflammation in diseases like sarcoidosis with vitamin D, > > whereas > > > > > cortisone is effective. And vitamin D hasn't been shown to > help > > > > > simple inflammation caused by common arthritis. And vitamin > D > > of > > > > > course requires conversion to 1,25(OH)2D to be anti- > > inflammatory, > > > > and > > > > > that doesn't necessarily occur in all tissues. - Mark > > > > > > > > > > > > > > > > > > > > ************************************** See what's free at > > > > http://www.aol.com. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 You don't have to have CFS to have a positive tilt table test. Many people feel a little dizzy when they stand up and could be induced to pass out by a tilt table test. This probably just shows weak adrenals, or perhaps some autonomic lag. I'd wager to say they don't give florinef to most people who fail a tilt table test, unless their blood pressure is consistently low, or they are passing out a lot. > > > you seem to know your science! thx. > the licorice helping is subtle, still trying to discern that by going > on and off and controlling other variables. > That is interesting about florinef, so it seems just a positive > tilttable test is not sufficient to hand that out....but they did. > thankfully I didnt stay on it. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 And then there's me. I have chronically low blood pressure, all the classic signs of low thyroid (low energy, low body temp, cold hands & feet, outer 1/3rd of eyebrows missing), but all my thyroid tests come out as low-normal, and I " passed " a tilt-table test about 5 months ago (i.e., I didn't pass out), which disappointed the researcher no end as he was trying to find research subjects. The endocrine system is so complex, I despaired of ever understanding it when I first started reading about it years ago. I'm finding this discussion of adrenal function fascinating. Marcia on in Salem, Massachusetts > > You don't have to have CFS to have a positive tilt table test. Many > people feel a little dizzy when they stand up and could be induced to > pass out by a tilt table test. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2007 Report Share Posted June 29, 2007 Marcia, how long did they have you stand there? I didn't pass out until 27 minutes, but I sure was nausated much of the time. a > > And then there's me. I have chronically low blood pressure, all the > classic signs of low thyroid (low energy, low body temp, cold hands & > feet, outer 1/3rd of eyebrows missing), but all my thyroid tests come > out as low-normal, and I " passed " a tilt-table test about 5 months ago > (i.e., I didn't pass out), which disappointed the researcher no end as > he was trying to find research subjects. The endocrine system is so > complex, I despaired of ever understanding it when I first started > reading about it years ago. I'm finding this discussion of adrenal > function fascinating. > > Marcia on > in Salem, Massachusetts > > > > > > You don't have to have CFS to have a positive tilt table test. Many > > people feel a little dizzy when they stand up and could be induced to > > pass out by a tilt table test. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2007 Report Share Posted July 1, 2007 JM, (off-line alot, so just getting to this) I began Florinef in 1995,6, after several years mostly bedridden. It put me on my feet and able to hold a conversation, also some multi-tasking. I overdid it, injured my back and went back down for a bit. Eventually I was no longer bedridden except a couple of times. The last was 2000? for 6 months and 2003 for a couple of weeks. I went on Florinef for NMH, an autonomic disorder in CFS. That itself, Autonomic disorders, for some, can cause severe reaction and recovery time, to slightest stress...even thinking something stressful. Tho I have never heard this, after Florinef, a constipation issue was completely resolved, never to return. I am never bedridden now, but need to sit with feet up alot every day. I'm usually out driving/errands or something every day, sometimes for hours. Best is short outings with breaks in between. { I am very injured/disabled in other ways, and Cardiac and Neuro problems. Some are probably *because* I can be upright/out so much }. Then, apparent adrenal rushes/exhaustion became pretty serious, with long recovery time -being fragile, others describe. In 2006, Dr. Cheney put me on low dose Cortef. It has been a life-saver for stress, and that rush thing. Another is dessicated adrenal by Standard Process. Love that! Each is immediate and espcially with the Cortef have really helped through a hard year...multiple deaths, and witnessing crime, car accident, on-line stress.. I'm not seeing Dr. Cheney now, so don't have monitoring. With Osteopath guidance, I stagger it a bit...concerned with effects of too much. I only take about a quarter of a 5mg, cause more did not feel right. I'm hyper reactive, pro and con, to everything. I think I could go a little higher lately. Sometimes I take a quarter of Klonopin at same time. This has to do with my tremor. Anyway, it helps alleviate that horrible rush, and definitely helps me cognitively and with articulation. I wanted to get off of Florinef, on general principles. Dr. Cheney wanted me to wait for a year of Cardiac treatment, but at that point I could not go back. HE said add Cortef, or try low dose prednisone instead of those 2. Have not tried that...not eager to. I'm winging it now, with slight monitoring from my dear Osteo. No one I see now knows what the heck all my treatment is about, but he's supportive and closest to " getting it " . I'll need to learn more, in my non existent spare time. It sounds like knows this stuff, so listen to her about the Florinef. Some cannot tolerate it at all. Others, as Dr. Cheney said " will kill for Florinef " . Guess that's me, too. Cutting back was disastrous. TC, Katrina --- In , " j mascis " <mascis_j@...> wrote: > > Thanks for the reply. What about Florinef? Have you tried it? > > One thing I was reading about 's was that " Aldosterone > regulates salt and water levels which affects blood volume and blood > pressure " > http://www.medhelp.org/www/nadf3.htm > > and that matches up with lots of my symptoms. Salt and water levels, > which would be the constant thirst, plus I read a interview with > Klimas on the DFW Cfids page where she said lots of PWC's she > had seen were low on total blood volume, most people had 4.5 liters, > she said the people she saw averaged a liter less, which is a hell of > a lot, plus the other stuff I listed in my first post. So that looks > worth checking into. I just wanted to see who has taken it and if it > helped, since my thyroid is messed up but I can't tolerate the > thyroid meds I've tried, etc. > > Thanks for the reply. > > > > > > > > > > > > Mark > > > > > > > > Let me say again that Vitamin D has significantly decreased > > > inflammatory > > > > spine pain for me. I am very thankful for that. > > > > > > > > mjh > > > > > > > > > > > > Yes and no. It can play a role in reducing inflammation for > some > > > > conditions, but not necessarily others. I.e. you can't reduce > the > > > > inflammation in diseases like sarcoidosis with vitamin D, > whereas > > > > cortisone is effective. And vitamin D hasn't been shown to help > > > > simple inflammation caused by common arthritis. And vitamin D > of > > > > course requires conversion to 1,25(OH)2D to be anti- > inflammatory, > > > and > > > > that doesn't necessarily occur in all tissues. - Mark > > > > > > > > > > > > > > > > ************************************** See what's free at > > > http://www.aol.com. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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