Guest guest Posted November 7, 2000 Report Share Posted November 7, 2000 Jennie, Beta blockers (I've taken propranolol and atenolol) reduce MVP symptoms but also lower BP (which worsens CFS symptoms). I already have low BP so I have had a problem with the beta blockers and recently discontinued their use. Steve B. MVP > > > > > > > > > > Hi Steve, > > > Thanks so much for the info on MVP.You are so > > correct about GPS > > > being useless at diagnosing MVP.I had palpitations > > for many years > > > which I found very disturbing.I went to several > > doctors who insisted > > > it was caused by stress.I would always protest and > > suggest I didn't > > > particularly feel stressed(naturally they knew > > better). > > > When my ME condition became extreme I had a > > terrifying episode of > > > palpitations and took myself to the local > > hospital. > > > Finally my female doctor sent me to cardiologist > > who within seconds of > > > listening to my heart said that I had MVP.He told > > me it is often genetic > > > (my sister has it but no symptoms) and is not > > caused by stress. I have a > > > problem with extra salt as I also have an inner > > > ear vestibular problem in which it is strongly > > suggested to eliminate > > salt. > > > I'm wondering what would be the Ausie equivalent > > of Gookinaid?is > > > this an electrolyte,re hydration powder? > > > > > > I also experience a constricting type pain in my > > left arm and > > > shoulder with occasional chest pains and > > breathlessness.I can > > > almost count on this occurring every time I'm > > exhausted and have > > > done too much which is often.I have to go to bed > > and rest.Usually > > > by the next day the symptoms have passed. > > > Do you think these symptoms are due to MVP?I often > > think I'll eventually > > > have a heart attack. > > > What is your opinion on taking anti biotics for > > dentist work? > > > Thanks again,I find your input most valuable. > > > Cheers > > > > > > > > > >Liz & all, > > > > > > > >The leading theory on the cause of mitral valve > > prolapse (adult onset) is > > > >that it is a neuroendocrine disorder (exceptions > > include some people who > > > >contract it via infections, connective tissue > > diseases, and few other > > > >causes). I've heard two neuroendocirne causes > > postulated. First, the > > shape > > > >of the heart is changed slightly due to changes > > in the muscle conduction > > > >caused by body's own electical stimulation system > > (less likely in my > > > >opinion). The second is that a portion of the > > brain that regulates blood > > > >volume is damaged, blood volume diminishes and > > the hearts diameter > > becomes > > > >slightly smaller. They have found that MVPers > > have blood volumes about > > 80% > > > >of normal. This cause makes more sense. If you > > squeeze a coke can, the > > top > > > >rises slightly. Same with the heart when the > > body's blood volume > > declines - > > > >the top of the heart where the valves are located > > rise slightly and fail > > to > > > >close completely with the result being the > > diagnostic " click " sound and > > in > > > >some cases mitral regurgitation with some blood > > flowing back into the > > > >chamber. I am treating this condition with added > > salt (actually I use a > > > >product called " Corrected Salt " by Life Plus > > 800-572-8446 which is > > supposed > > > >to provide all the benefits of salt, plus better > > balance of sodium, > > > >magnesium and potassium and less of the potential > > harmful affects of > > salt). > > > >I also most importantly drink a qt. a day of > > Gookinaid which raises blood > > > >volume and try as the MVP specialists recommend, > > to drink a gallon of > > > >liquids a day. I am hoping that if I can keep my > > blood volume up, I can > > > >possibly reduce the severity of the MVP over time > > or maybe eliminate it, > > > >although that would be a tall order according to > > my cardiologist. The > > > >condition dissapeared twice during brief > > remissions in the CFS early in > > my > > > >illness. MVP is more common in those suffering > > from CFS which is no big > > > >surprise as the cause seems to fit with some of > > the CFS theories and many > > > >PWC's have abnormally low blood volume as > > demonstrated by Bell and > > Streeten. > > > >The symptoms of MVP - bouts of irregular heart > > rhythms, syncope, fatigue, > > > >cognitive problems (caused by less blood going to > > brain), loss of breath > > are > > > >all common symptoms of CFS and I believe many, > > many more PWC's have MVP > > > >without realizing it. I try to monitor the > > ongoing MVP research because > > any > > > >treatments that are found to be successful may > > help a lot of PWC's. A > > last > > > >important note: physicians are almost as inept at > > diagnosing this illness > > as > > > >they are at diagnosing CFS. Until about 10-15 > > years ago the majority of > > > >physicians believed MVP was an anxiety disorder > > found most common in > > women > > > >(sound familiar?). > > > >Steve B. > > > > > > > >----- Original Message ----- > > > >From: <nw433@...> > > > ><egroups> > > > >Sent: Thursday, November 02, 2000 12:15 PM > > > === message truncated === > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2000 Report Share Posted November 7, 2000 Just wanted to remind all that calcium channel and beta blockers work very well to control the symptoms of MVP. I've been taking a beta blocker for 16 years with no side effects - currently taking 25mg of Metoprolol per day. It controls my symptoms. Best, Jennie --- " R. Bullock " <bullocks@...> wrote: > , > > Amoxicillin (just one large dose) before going to > the dentist is not only a > must, it may save your life. Without it or another > antibiotic you could > develop infective endocarditis (IE) which would at a > minimum worsen your MVP > and could kill you. I would suggest popping > Amoxicillin at the first sign > of a fever and going immediately to the > cardiologist. In your case given > your ME/CFS, I doubt it's genetic unless you have a > connective tissue > disease, Marfans syndrome....It's usually only > genetic when it begins at > childhood I believe. I don't think the majority of > the electrolyte > replacement products are very effective unless they > have a lot of glucose > which is apparently necessary. Gookinaid is very > cheap. I spend less than > $10/month on it. You can probably get it shipped to > you " downunder " quite > inexpensively; call 858-689-1859 (Gookinaid) with > the US prefix. It comes > in 2 pound containers of the powder. Ask for either > the orange flavor or > the flavor with the least sugar or unflavored. I > doubt your pain and > weakness is caused by clogged arteries but I could > be wrong. It could be > caused by mitral regurgitation (MR). When you work > too hard your heart > can't adequately supply enough blood to meet the > damands your putting on it. > If it is regurgitation, have regular echocardiograms > and stress treadmill > tests because if regurgitation becomes severe, the > heart becomes mishapen > and eventually it can lead to heart failure. Also, > if you have significant > MR, your risk of stroke goes up expontentially > because the blood that > backflows can congeal and form a clot that goes to > your brain or lungs > causing an embolism. Gookinaid may help a lot by > keeping your blood voume > up and keeping your potassium and magnesium levels > in balance. Regards, > Steve B. > MVP > > > > > > Hi Steve, > > Thanks so much for the info on MVP.You are so > correct about GPS > > being useless at diagnosing MVP.I had palpitations > for many years > > which I found very disturbing.I went to several > doctors who insisted > > it was caused by stress.I would always protest and > suggest I didn't > > particularly feel stressed(naturally they knew > better). > > When my ME condition became extreme I had a > terrifying episode of > > palpitations and took myself to the local > hospital. > > Finally my female doctor sent me to cardiologist > who within seconds of > > listening to my heart said that I had MVP.He told > me it is often genetic > > (my sister has it but no symptoms) and is not > caused by stress. I have a > > problem with extra salt as I also have an inner > > ear vestibular problem in which it is strongly > suggested to eliminate > salt. > > I'm wondering what would be the Ausie equivalent > of Gookinaid?is > > this an electrolyte,re hydration powder? > > > > I also experience a constricting type pain in my > left arm and > > shoulder with occasional chest pains and > breathlessness.I can > > almost count on this occurring every time I'm > exhausted and have > > done too much which is often.I have to go to bed > and rest.Usually > > by the next day the symptoms have passed. > > Do you think these symptoms are due to MVP?I often > think I'll eventually > > have a heart attack. > > What is your opinion on taking anti biotics for > dentist work? > > Thanks again,I find your input most valuable. > > Cheers > > > > > > >Liz & all, > > > > > >The leading theory on the cause of mitral valve > prolapse (adult onset) is > > >that it is a neuroendocrine disorder (exceptions > include some people who > > >contract it via infections, connective tissue > diseases, and few other > > >causes). I've heard two neuroendocirne causes > postulated. First, the > shape > > >of the heart is changed slightly due to changes > in the muscle conduction > > >caused by body's own electical stimulation system > (less likely in my > > >opinion). The second is that a portion of the > brain that regulates blood > > >volume is damaged, blood volume diminishes and > the hearts diameter > becomes > > >slightly smaller. They have found that MVPers > have blood volumes about > 80% > > >of normal. This cause makes more sense. If you > squeeze a coke can, the > top > > >rises slightly. Same with the heart when the > body's blood volume > declines - > > >the top of the heart where the valves are located > rise slightly and fail > to > > >close completely with the result being the > diagnostic " click " sound and > in > > >some cases mitral regurgitation with some blood > flowing back into the > > >chamber. I am treating this condition with added > salt (actually I use a > > >product called " Corrected Salt " by Life Plus > 800-572-8446 which is > supposed > > >to provide all the benefits of salt, plus better > balance of sodium, > > >magnesium and potassium and less of the potential > harmful affects of > salt). > > >I also most importantly drink a qt. a day of > Gookinaid which raises blood > > >volume and try as the MVP specialists recommend, > to drink a gallon of > > >liquids a day. I am hoping that if I can keep my > blood volume up, I can > > >possibly reduce the severity of the MVP over time > or maybe eliminate it, > > >although that would be a tall order according to > my cardiologist. The > > >condition dissapeared twice during brief > remissions in the CFS early in > my > > >illness. MVP is more common in those suffering > from CFS which is no big > > >surprise as the cause seems to fit with some of > the CFS theories and many > > >PWC's have abnormally low blood volume as > demonstrated by Bell and > Streeten. > > >The symptoms of MVP - bouts of irregular heart > rhythms, syncope, fatigue, > > >cognitive problems (caused by less blood going to > brain), loss of breath > are > > >all common symptoms of CFS and I believe many, > many more PWC's have MVP > > >without realizing it. I try to monitor the > ongoing MVP research because > any > > >treatments that are found to be successful may > help a lot of PWC's. A > last > > >important note: physicians are almost as inept at > diagnosing this illness > as > > >they are at diagnosing CFS. Until about 10-15 > years ago the majority of > > >physicians believed MVP was an anxiety disorder > found most common in > women > > >(sound familiar?). > > >Steve B. > > > > > >----- Original Message ----- > > >From: <nw433@...> > > ><egroups> > > >Sent: Thursday, November 02, 2000 12:15 PM > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2000 Report Share Posted November 7, 2000 Most " regular " MD's not able to identify MVP in my opinion unless it is particularly severe and they are looking for it. Steve B. Re: MVP > Would a regular Md know the symptomology of MVP or is that more a > speacialists call? I don't know the symptoms but want to cover my bases, > make sure my doc is the one to check this out. > > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2000 Report Share Posted November 7, 2000 Would a regular Md know the symptomology of MVP or is that more a speacialists call? I don't know the symptoms but want to cover my bases, make sure my doc is the one to check this out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2000 Report Share Posted November 8, 2000 - I've been able to keep my blood pressure up by using salt - haven't had a problem with lowered blood pressure. But this may not work for everyone. Best, Jennie --- " R. Bullock " <bullocks@...> wrote: > Jennie, > > Beta blockers (I've taken propranolol and atenolol) > reduce MVP symptoms but > also lower BP (which worsens CFS symptoms). I > already have low BP so I have > had a problem with the beta blockers and recently > discontinued their use. > Steve B. > MVP > > > > > > > > > > > > > > Hi Steve, > > > > Thanks so much for the info on MVP.You are so > > > correct about GPS > > > > being useless at diagnosing MVP.I had > palpitations > > > for many years > > > > which I found very disturbing.I went to > several > > > doctors who insisted > > > > it was caused by stress.I would always protest > and > > > suggest I didn't > > > > particularly feel stressed(naturally they knew > > > better). > > > > When my ME condition became extreme I had a > > > terrifying episode of > > > > palpitations and took myself to the local > > > hospital. > > > > Finally my female doctor sent me to > cardiologist > > > who within seconds of > > > > listening to my heart said that I had MVP.He > told > > > me it is often genetic > > > > (my sister has it but no symptoms) and is not > > > caused by stress. I have a > > > > problem with extra salt as I also have an > inner > > > > ear vestibular problem in which it is strongly > > > suggested to eliminate > > > salt. > > > > I'm wondering what would be the Ausie > equivalent > > > of Gookinaid?is > > > > this an electrolyte,re hydration powder? > > > > > > > > I also experience a constricting type pain in > my > > > left arm and > > > > shoulder with occasional chest pains and > > > breathlessness.I can > > > > almost count on this occurring every time I'm > > > exhausted and have > > > > done too much which is often.I have to go to > bed > > > and rest.Usually > > > > by the next day the symptoms have passed. > > > > Do you think these symptoms are due to MVP?I > often > > > think I'll eventually > > > > have a heart attack. > > > > What is your opinion on taking anti biotics > for > > > dentist work? > > > > Thanks again,I find your input most valuable. > > > > Cheers > > > > > > > > > > > > >Liz & all, > > > > > > > > > >The leading theory on the cause of mitral > valve > > > prolapse (adult onset) is > > > > >that it is a neuroendocrine disorder > (exceptions > > > include some people who > > > > >contract it via infections, connective tissue > > > diseases, and few other > > > > >causes). I've heard two neuroendocirne > causes > > > postulated. First, the > > > shape > > > > >of the heart is changed slightly due to > changes > > > in the muscle conduction > > > > >caused by body's own electical stimulation > system > > > (less likely in my > > > > >opinion). The second is that a portion of > the > > > brain that regulates blood > > > > >volume is damaged, blood volume diminishes > and > > > the hearts diameter > > > becomes > > > > >slightly smaller. They have found that > MVPers > > > have blood volumes about > > > 80% > > > > >of normal. This cause makes more sense. If > you > > > squeeze a coke can, the > > > top > > > > >rises slightly. Same with the heart when the > > > body's blood volume > > > declines - > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2000 Report Share Posted November 10, 2000 My doctor found my MVP with an ultrasound. If it is pronounced it's easy to spot and you can also hear a distinctive click in the heartbeat. However, I'd recommend seeing a cardiologist to make sure nothing else is wrong. Good luck with this - Jennie --- jane_doe_press <jane_doe_press@...> wrote: > Would a regular Md know the symptomology of MVP or > is that more a > speacialists call? I don't know the symptoms but > want to cover my bases, > make sure my doc is the one to check this out. > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2008 Report Share Posted April 6, 2008 It is now considered unnecessary to take antibiotics before a dental procedure. As for palpitations---I always have them but the LDN at any strength made them so much worse--also could not sleep and I tried for almost four months with different fillers. I was taking it for a condition not spoken of on this board and believed that it was useful but the side effects, in my case only, were not worth it. I still send the links to many people and speak of it as a beneficial medication. Quote Link to comment Share on other sites More sharing options...
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