Topic: MVP Syndrome & Dysautonomia...Explains so Much (cold, low BP & temp, palps, anxiety)
Jellybelly
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A couple of days ago I was looking for books on Lyme at B&N and found absolutely none, but while looking, stumbled on this book..... The Mitral Valve Prolapse Syndrome/Dysautonomia Survival Guide .
I have been sick for the majority of my life, very symptomatic for the past 26 years. It was only about 4 1/2 years ago that I was told that I had MVP. No one had ever told me that before until I had to have a stress echo for Vtach. No one ever heard the click or murmur that is often associated with MVP when listening to my heart.
It was even more recent that I started hearing the word Dysautonomia, and that I likely had it. I knew a few things about it, like it had to do with low body temperature and low blood pressure, but not much else.
The book is small, so I grabbed it, and am I ever glad I did. Even though it doesn't give bottom line cause of dysautonomia it is packed with info on what it is, what the mechanics are, and what can be done about it. For us that means dealing with it until we can bring the likely cause under control which may very well be TBD. OR it may be one of the factors that makes us succumb to things like Lyme when others do not.
Here are the symtpoms of MVP Syndrome/Dysautonomia:
FATIGUE that is overwhelming and present most of the time. Making you feel as if all the energy has been drained from your body.
HEART PALPITATIONS
PVCs or PREMATURE VENTRICULAR CONTRACTIONS
HEADACHES
REFLUX
IBS
CHEST PAIN
DIZZINESS
FIBROMYALGIA PAIN
TINNITIS
There are other symptoms associated with MVPS/D:
Very cold hands and feet
Heat intolerance
Shakiness
Swelling of arms and legs
Shortness of breath
Numbness in any part of the body
Excessive perspiration or INABILITY TO SWEAT
Trouble concentrating or memory problems
Hightened sensitivity
Scoliosis
Exaggerated startle reflex (that's very me)
Low body temperature
Nausea
Neck aches
Arm and leg aches
Backaches
Then there are a whole host of associated psychological symptoms like, anxiety, panic attacks, depression.
Those who already have a diagnois of MVP know what it is, but for those who don't, we were likely told it is a floppy Mitral Valve, which according to this book is not exactly the right way to explain it.
Dysautonomia is
quote:a delayed, inappropriate, or exaggerated response of the autonomic nervous system to a stimulus that can be either internal or external
.
There are basiclly two parts to the autonomic nervous system, the Sympathetic and the Parasympathetic.
The sympathetic is the accelerator of your nervous sytem and the parasympathetic is the brakes.
The sympathetic controls the rate at which you heart rate increases, your blood pressure increases and your flow decreases. It prepares your body for stressful situations.
Most people with dysautonomia exhibit an excessive degree of sympathetic nervous sytem activity (the accelerator). Signs of excited nervous sytem are, rapid strong or extra heartbeat. Slow digestion (constipation) and alert wakefulness at inappropriate times (like when we are supposed to be sleeping).
Sound familiar??? How many feel so exhausted theym can't stand up, yet at the same time so wired, they can't sleep?
You can have MVP and NOT have dysautonomia. But people with dysautonomia, likely have a MVP even to a small degree. The dysautonomia is likely the reason for the MVP in this case.
People with dysautonomia have very low blood volume, about 80-85% of what is normally expected. Its kind of chronic dehypdration. Low blood volume causes the brain to move blood away from extremities to the more vital body parts, causing cold hands and feet.
When fluid levels drop, the brain calls upon adrenaline to spead up the heart rate to provide enough oxygen and nutrients. Chronic low fluid means chronic excess of adrenaline. The stressor may be the Lyme which is chronic. Our brain responds with chronic adrenaline, because there is a chronic stress. Our adrenaline pumps are running at warp speed and can't be shut off, yet our bodies collapse because they can go no further, even though we are being told to RUUUNNNNNN!!!!
What does low blood flow have to do with MVP? The heart itself shrinks because of the low blood volume, but the valve does NOT shrink, it stays the same size. Then because it is now to big for the heart, it "flops" around. That makes so much sense....at least in my case. It also made me wonder if a lot of the pain we experince isn't from contracting muscles like the heart that have shrivled or shrunk or whatever you want to call it due to dehydration.
We have talked about this before here and there, but now I really understand why salt is a key in correcting this problem. It helps us to hold on to water which we don't seem to be able to do at this moment. I also began wondering if this is not a factor in why people on the Salt/C Protocol see improvements besides possibly killing the pathogens.
The book recommends keep salt intake at the very least normal and if not even more then normal. This is with the very small percentage of those with dysautonomia who actually have high blood pressure, but most of us have abnormally low.
The book really made me see the need to avoid caffeine. Why? because we all know that caffeine dehydrates.
Because we have a low blood volume, we are hypersensitive to meds, and may explain why some of us herx so bad. We have less fluid to dilute the toxins related to die off??? Less fluids to dilute the meds???
It's a little paperback, only 159 pages. I think that it is packed full of information in helping us understand WHY we need to do certain things that are often recommended here, like stopping caffeine. Makes me even more inclined to pay attention when I understand the reason I need to make the changes.
It's an easy read for all of us. You May Have IT
[ 17. January 2007, 02:38 PM: Message edited by: Jellybelly ]
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Jill E.
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Thank you for posting this. I'd like to get this book. I'll see if I can find it on Amazon. I'd love to know what else the author suggests, in addition to the salt and caffeine issues, to help slow down this vicious cycle.
Throughout my young adulthood, I kept getting diagnosed with an intermittent murmur (some doctors could hear it, others could not and disagreed) and MVP. But years later, it got changed to mild mitral valve regurgitation and not to worry.
But I have significant dysautonomia with Lyme/TBDs and your post is making me wonder how much is being worsened by the issues you discuss.
Thanks again - this is very interesting and helpful.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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lymednva
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Jelly,
Thanks for this great post about Dysautonomia. It was my most disabling symptom when I was first treated for CFS, which turned out to be Lyme.
I have asked my LLMD point blank if I have MVP and he says no, despite the fact that he is the first of my doctors to finally notice I have a heart murmur.
Perhaps I need to see his brother the cardiologist for further info. I figure as long as it is not causing me any more problems and it is being treated well I can avoid the cardiologist. I certainly don't need any more MD appointments.
I find it is so important to get this info out to people because so many are suffering from it and don't know there are ways to control it.
Mine is not in perfect control, but at least I can stand long enough to cook a simple meal now, which I couldn't do before my Lyme treatment started.
I take several meds to help with mine because I was bedridden before treatment. Even sitting up for 30 minutes would cause me to need to lie down and throw my legs over the back of the sofa to get the blood to go back to my body from my feet.
I've been on treatment for adrenal fatigue and can feel the difference now. I drink tons of water every day. Sometimes people can't believe how much I drink, but it helps things stay in balance, which is so important.
Thanks again for bringing this impotant information to us.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Jellybelly
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I didn't really realize how much dysautonomia affected me until I read this book. Virtually every symptom we experience can be related to it.
Some other points brought out in the book are, that the autonomic nervoous system governs also the digestive functions, sleep patterns, bladder functions, constriction and dialation of pupils (which may explain light sensitivity), lung function, reproductive organs and sexual reflexes.
Women tend to have the most severe symptoms.
Things that mimic MVPS/D are hypoglycemia, thyroid disease, CFS, bi-polar disorder, excercise induced asthma, and ADD.
Conditions often seen in MVPS/D are a lanky thin body shape (me), hyperextendible joints (me), thin "spider" like fingers (me).
Swayback
Breastbone is abnormally depressed.
Ever had a doctor tell you have an "Irritable Heart"?
More problems that are associated are twitching or shakiness, visual disturbances and rashes (wonder what piece the authors might be missing)?
[ 16. January 2007, 06:13 PM: Message edited by: Jellybelly ]
Posts: 1251 | From california | Registered: Apr 2005
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I wish this book had been around in the 80's when these symptoms manifested for me. It would have at least provided me with a means of understanding what was going on in my body.
-------------------- Linda Posts: 749 | From New Hope, PA | Registered: May 2002
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Truthfinder
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Wow, is right!
This is terrific information, Jelly. I'm sure there are a lot of people who could benefit from this information.
One internist I had suggested that I might have a problem with my "autonomic nervous system", and then she promptly went and quit her practice, so that was the end of that. I talked to my doc last time about getting tested for MVP...
I'm going to pass this on to a couple of my Fibro/CFS friends, too.
Great post!
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Truthfinder
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Lymednva, what meds do they prescribe for dysautonomia?
I think there is something they can give to help MVP, too, but I have no idea what it is. Anybody know?
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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kelmo
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She was also a smoker...I wonder if that contributed.
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Aniek
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Ever since being diagosed with peripheral autonomic neuropathy, I've discovered how important a role the ANS plays in our health.
I really believe many of my symptoms are from the ANS disfunction, which was caused by Lyme. But treating Lyme alone won't correct the ANS. The ANS needs a boost as well.
ANS problems can get worse from poor nutrition. I have a severe amino acid deficiency, which means my body can't perform necessary functions. Since you need amino acids to get amino acids out of food, I can't fix this without supplementing.
I work with a doctor who uses a protocol including B vitamins, Vitamin C, magnesium, and amino acids plus many more supplements. My disfunction isn't so bad that I can't stand for long periods. But I have a pulse in the 90's, slightly low blood pressure and low body temperature.
I know he uses meds on some patients. But we are trying to keep me off meds, since I'm already on so many.
My energy is definitely up. I've noticed a huge difference in my progress in yoga, including new muscle growth.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Thank you for posting about this, Jellybelly.
I have so many of these symptoms. I have HIGH blood pressure, but low blood sodium and chloride. I've tried this--eating salty food with lots of water can bring my blood pressure DOWN.
One doctor told me it was vagus nerve involvement.
I've never been told I have MVP but when I was getting allergy shots (misdiagnosis) I had to stop the treatment and start taking atenolol because of the palpitations and rapid, hard pulse.
This condition explains so much. Why violent movies make me so nervous. Why sudden noises make me jump out of my skin. Why simple stresses seem so overwhelming.
I don't have reflux and low blood pressure, but I do have mild scoliosis and hypermobile joints.
I got about two hours of sleep last night, from being in pain and having my face twitch, and from just not being able to go to sleep.
Today I feel shakey, but not as bad as would be expected from so little sleep. Must be the adrenaline--I better prepare for the dead stop when it wears off!
Besides the exaggerated drug effects due to low blood volume, could it be that activating the sympathetic nervous system explains why some of us seem to herx on everything? (Me)Maybe it's not really a herx reaction, but a autonomic nervous response?
Seems like a Catch 22, doesn't it.
Again, good information!
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klutzo
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My DH and I both have MVPS. Mine is acquired, probably from Lyme, and he has the inherited kind.
The inherited kind is genetically linked with tallness, thinness, large hands and feet, and a narrow chest with a smaller chest cavity area. It is associated with IBS, scoliosis, endometriosis, and a few others, as Jelly mentioned.
I strongly recommend the book "Taking Control - Living With the Mitral Valve Prolapse Syndrome", second edition, by Kristine A. Bludau Scordo, PhD, RN. It is an excellent and complete guide to this problem and comes in paperback.
It IS vital to know if you have an MVP, so if you suspect it, insist on having an echocardiogram (a quick, painless ultrasound of the heart).
The reason is because if you have any regurgitation at all, you must take certain ABX before all procedures that may involve blood, even teeth cleaning. Only certain types of ABX work for this. It is to prevent the slightly higher risk of getting Bacterial Endocarditis (BE). This is a life-threatening infection.
When my current dentist retires, I am going to be up the creek without a paddle, since he is the only one I've found who will clean my teeth witout ABX (I am allergic to all the ones that work to protect against BE).
People with MVPS are often hypersenstive in every way, and wondering why they are crying for an hour after a sad movie, while everyone else makes fun of them and saying: "It's only a story, what is wrong with you?" This book will go a long way to explaining why you are like that...it helped me a lot!
Vanderbilt Univ. has an excellent web site about dysautonomia for more info. There is also a large clinic in Birmingham, AL that exists just for evaluating MVPS using tilt-table testing.
I think you can tell on your own....people with plain MVP often go their whole lives without noticing it, whereas most MVPS people have some symptoms, and 40% have panic attacks at some point.
Klutzo
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lymednva
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Just remember that my doctor called my dysautonomia "profound" when he first dx'd it. My BP was 80/50 when lying down, it went down from there when I stood. I didn't stand for long!
I take midodrine (generic for ProAmatine), a vasoconstrictor, fludrocortisone (generic for Florinef) to increase blood volume, and Inderal to balance my BP.
When taking fludrocortisone you must take rx Potassium to replace what the drug leeches from your system.
Other techniques that have helped me include using a collapsible footrest to keep my knees above my hips, so the blood doesn't pool in my feet. These are available from Jo Anne's Bed and Back, and they are on the Internet.
I also have a recliner, which was recommended to me at a local support group for MVPS/Dysautonomia. I was amazed at how much better I felt when I first got it.
It really makes a difference and gives me my energy back when I have been standing too long. I highly recommend this!
Other things that have been mentioned include a shower chair and a deck chair in my bathroom (won't rust, mildew easy to clean) to use when I am grooming.
Finally I use electric carts at stores when they are available or my own scooter. As a single person I found it necessary to have a way to shop independently. Wheelchairs may help for others.
I have a large file on this I would be happy to send by PM to those who are interested in it.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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AliG
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This is really very interesting.
Sugar also dehydrates, as does alcohol (product of spirochete fermatation of sugar). I think smoking might, as well.
Lymednva,
Fludrocortisone is a STEROID ! Is that OK for Lymies to be taking??
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Jellybelly
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Klutzo, I'm glad that you saw this, cuz I know that you deal with a lot of this stuff. Interesting what you saw about having acquired this or inheriting it. It sounds like I may be more predisposed to it. Does your husband have this body type? This would make sense and explain why so many of us here don't have this particular body type.
My daughter seems to also have at least the dysautonomia part, but doesn't really have my body type. Actually none of my family have my body type, yet they all seem to have at least acquired it. My dad was always so nervous. When he came to visit, he woould never sit down, but rathered to pace the house. I feel like that often too. Then when he got really sick, he was not able to pace.
Posts: 1251 | From california | Registered: Apr 2005
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I have the same issues, but have had an echocardiogram done, and they said nothing was wrong. Of course, I felt fine at the time it was done, but they said they would see anything, even if it wasn't going on at the time of echo.
Which leads me to believe that it's the Lyme, that is causing it in some other fashion(for me at least).
I've tried anti-depressants, which only caused me to 'not care' that I was so dizzy and sick. I don't know where else to go, or if this is just an association with Lyme and just have to deal with it, while being treated.
-------------------- Never walk through a cornfield backwards.
Marnie
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Need to back this up to find the REAL underlying cause. MVP (mitral valve prolapse) is most definitely caused by a drop (a serious drop) in Mg levels.
This is long, but I guarantee you will learn a lot...as I have!
You need to know why Mg levels dropped and continue to drop. I will try to explain below. But first...keep this in mind. Bb wants/needs choline.
This is going to get complex. The interplay of all the nutrients makes this very difficult to follow, but I will try to help you to understand at least some of it.
ALL gram negative pathogen are missing "acids" and particular ones need a particular "acid". Bb especially wants choline (sorta a B vitamin, but in reality not quite).
Bb is disrupting the transport of Na and K...sodium and potassium.
These electrolytes are supposed to go in and out of the cells. Normally K is supposed to be IN the cells, but instead, too much Na is.
Na carries *choline* INTO the cells. Again, normally K is supposed to be IN the cells. Instead, Na is, and K remains extracellular. K levels rise at first in lyme...as it is then "extracellular".
Choline is what Bb wants/needs and it drives choline in via Na. Furthermore, by triggering glycolysis (sugar to make ATP) = less ATP which disrupts the Na-K and Mg-ATP pump even further. Now Mg can't be pumped back into the cells.
Mg, and ONLY Mg (!) is attached to ATP as Mg-ATP. ATP is our cells' energy carrier. Mg serves to "light the fire". Not enough Mg-ATP and were "pooped out"...very tired. No energy.
At the outset of lyme, this bond is broken as Mg leaves muscle cells in HUGE amts. It comes right out of storage from our muscle cells. The Mg-ATP bond is broken.
Why? For many reasons, but primarily to INactivate HMG Co A reductase(liver enzyme) which halts VLDL (very low density lipoproteins) release from the liver which ...
"Choline is an important nutrient throughout life. It is the precursor for the neurotransmitter acetylcholine
and for phosphatidylcholine,
***a structural component of VLDL***, which is essential for normal lipid-cholesterol transport."
The body is trying to stop providing Bb with extra choline!
In addition...Mg (and Ca) are needed to form healthy antibodies. Ca is our most abundant mineral, so it is not as much a problem as is the supply of Mg. The body will only let the level drop just so far before it has to use OTHER minerals to maintain our pH.
Bb enters the cell, Mg leaves, triggers "call bell"...NFkB... to signal TNF alpha (inflammation) to signal beta cells (WBCs from bone marrow - that's were "B" (beta) cells originate) to help out. Some of these cells go to the thymus to become T cells and to make our antibodies. These T cells soar (in HIV, the opposite happens...too few T cells, too many B cells).
Mg is an anti-inflammatory (to a degree) as well as an anti-histamine. When Mg leaves the cells, this can trigger the next reactive mineral to go in...calcium. For many cells (thyroid), this isn't good, so up goes MORE TNF alpha to halt this.
Getting back to sodium...
Na is displacing Mg. It is more "reactive", but K is more "reactive" than Na. Hydrogen is at the top of the list (and lithium is right below it.)
In "reactivity order"...H, Li, K, Na, Ca, Mg (and nearby Mn and Al).
Minerals (or glycogen) react with acids to produce HYDROGEN.
We MUST have hydrogen...all the time. In split seconds.
Hydrogen. pH. Goes right into the cells, BUT...must be carried INTO the mitochondria (via CoQ10) where apparently Bb is located. Bb looks to be hiding out in the POWERHOUSES of our cells.
Normally we make a LOT more ATP when we use the "oxygen route"... a LOT. Bb does NOT like this route.
We HAVE to increase our ATP which will drive Mg back into the cells as well as K. The primary nutrients to make ATP are: d ribose and creatine, from what I have read...so far(!)
KCL is one of Bb's least favorite things. It also does not like a lot of oxygen, nitric oxide, the superoxide free radical, and our own HEALTHY antibodies (those not damaged - fab portion). Ethanol (alcohol), which Bb also "moves away from" simply alters its lipid outer cell wall as well as impacting OUR OWN cell walls.
Spirochetes ferment sugar to ethanol. All of them do. This high level of ethanol ongoing is really harmful to many cells of the body.
To destroy a bacteria...basic microbiology...we have to damage the outer cell wall (poke holes in it) OR prevent its formation.
Bb is using Mn and our zinc. These look to bind to SOD...an antioxidant enzyme and the increase in SOD downregulates another critical enzyme, catalase...which is our most abundant enzyme.
Bb can thus shelter itself from "free radical"/acid damage (by acid, I am refering to H2O2 also). We make H2O2 all the time in our cells. This is hydrogen peroxide, a weak acid that is capable of destroying MANY pathogens, including some spores.
Our cells are not supposed to REMAIN acidic, or they will die, so this is where the antioxidant enzymes come into play...superoxidase dismutase, glutathione and catalase are the 3 primary ones.
Normally, Bb (via a PKC inhibitor) would trigger cell death...and would be free then to roam the body...so other things kick in to try to stop the infected cell from dying. Trap Bb.
Now, re: VLDL and cholesterol...both Bb and US need the same nutrients.
This gets tricky because Bb's outer cell wall needs "cholesterol" nutrients and all of our OWN cell walls (as well as our mylein sheath) need cholesterol too.
So...instead of VLDL release (liver producing the nutrients to make cholesterol) we then have to rely on our DIET to provide the healthiest fats. Unsaturated or monosaturated in order to protect our own cell walls and myelin sheath.
The omega 3s are especially important.
Bb's genetic code indicates the presence of C- acetyltransferase. This enzyme is needed to make acetylcholine.
N-acetyltransferase is needed to make MELATONIN...a powerful anti-oxidant...which looks to be "upregulated" to counter. Melatonin helps us to FALL ASLEEP.
Bb is triggering a lot of "oxidative stress". It appears our stores of vitamin E are also impacted to a HUGE extent.
While we must have oxygen to be healthy, it also leads to our demise. Which is why our body temperature drops. Our oxygen needs drop as our body temperature drops. This is PROTECTIVE from "extra" oxidative damage.
In other words, it looks like we are using Mg and the antioxidant, vitamin E, to FIGHT...primarily (as well as many other nutrients ...vitamin C...we don't store, unfortunately).
In addition...the "counter" for acetylcholine in the body is norepinephrine which comes from dopamine. Dopamine -> norepinephrine -> epinephrine (also called adrenaline) -> cortisol + oxytocin.
See adrenaline? Now the adrenals have been alerted...FIGHT, FIGHT, FIGHT.
This disrupts the HPA axis. Hypothalamus (temperature regulation), pituitary (growth hormone drops), and adrenals.
The HPT (T being thyroid) axis is disrupted too as the body is talking to itself...help...you do this, I'll do this...
Trying hard to fight...to find a way to destroy a very, very complex, very dangerous invasion of a pathogen...not to mention the complexity if Bb brings along "friends".
To complicate matters...zinc. Bb is using ours. Our immune system must have this nutrient. Our thymus, the "seat of our immunity" needs zinc.
Calprotectin, in our neutrophils (most abundant WBCs) bind zinc...making it unavailable for Bb. These cells are produced about every 3 weeks which is a curious time frame (herx cycle?).
We know cell wall deficient pathogens can be destroyed by osmotic pressure changes and even ultrasound. Barometric pressure changes too? To "finish the job"???
Now...specifically, if you have read thus far here are the direct MVP-Mg links:
Magnesium and the Heart - Lyme Symptoms #8, 17, 18, 19, 24, 29, 34, 37
``Although mitral valve prolapse usually causes no life-threatening problems, it has been associated with an array of disturbing symptoms, including heart palpitations, chest pain, shortness of breath, dizziness, fatigue, anxiety, headaches and mood swings.
Doctors refer to these collectively as mitral valve prolapse syndrome. `These symptoms aren't caused by the valve itself,' Dr. Scordo says. `But they are often part of the package.'
These symptoms seem to be caused by disturbances in the body's autonomic nervous system. That's the nervous system that works without conscious control and governs the glands, the heart muscle and the tone of smooth muscles, such as those of the digestive system, the respiratory system and the skin.
`People with mitral valve prolapse often have overreactive autonomic nervous systems,'
explains Sidney M. Baker, M.D., a general practitioner in private practice in Weston, Connecticut, with a special interest in mitral valve prolapse. `Their bodies have a hard time adjusting to changes in the environment. They may be sensitive to light and noise, for instance.'
The symptoms are believed to be caused by a number of physiological changes and can often be helped by dietary changes. In fact, dietary changes are often all that's needed to alleviate symptoms,' Dr. Scordo says.
One mineral that has gotten some attention when it comes to mitral valve prolapse is magnesium. Several studies have found that a high percentage of people with mitral valve prolapse have lower than normal magnesium levels.
And one study by researchers at the University of Alabama School of Medicine in Birmingham found that supplemental magnesium relieved many of the symptoms associated with this disorder.
The study, of 94f people with mitral valve prolapse, found that 62 % of them had low red blood cell levels of magnesium.
Those people were also more likely to have additional symptoms: muscle cramps, migraines, and a condition called orthostatic hypotension, in which their blood pressure dropped when they first stood up, making them light-headed.
Overall, there was a 90% decrease in muscle cramps, a 47% decrease in chest pain and a definite decrease in blood vessel spasms in the people taking magnesium, reports the study's main researcher, Cecil Coghlan, M. D., professor of medicine at the University of Alabama School of Medicine.
Palpitations also were markedly less, and a certain kind of heart arrhythmia called premature ventricular contraction was reduced by 27%. People taking magnesium also reported fewer migraines and less fatigue.
Magnesium deficiency can be induced by the very drugs meant to help heart problems, such as digitalis and some types of diuretics (water pills).
These drugs cause the body to excrete both magnesium and potassium, leaving people in short supply of these nutrients.
Several studies have shown that when it comes to certain types of arrhythmia, magnesium can save lives.
One study, by Dr. Sueta and her colleagues at the University of North Carolina at Chapel Hill, found that the risk of developing potentially fatal ventricular arrhythmia was reduced by more than half in people with heart failure who received
large intravenous doses of magnesium
compared with those who did not receive the mineral.
Intravenous magnesium, says Dr. Sueta, is now considered standard therapy for two types of arrhythmia; torsades de pointes, an unusual type of ventricular arrhythmia, and ventricular arrhythmia induced by digitalis, a commonly prescribed heart drug.
Studies have shown that 65 percent of all people in intensive care units and 11 percent of people in general care sections of hospitals are deficient in magnesium, according to Dr. Sueta. So are 20 to 35 percent of people who have heart failure. `This is much more common than most people realize,' she adds.
Magnesium deficiency can be induced by the very drugs meant to help heart problems. Some types of diuretics (water pills) cause the body to excrete both magnesium and potassium, as does digitalis. And magnesium deficiency is often at the bottom of what's called refractory potassium deficiency, Dr. Brodsky adds. `The amount of magnesium in the body determines the amount of a particular enzyme that determines the amount of potassium in the body,' he explains. `So if you are magnesium -deficient, you may in turn be potassium-deficient, and no amount of potassium is going to correct this unless you are also getting enough magnesium.'
Both Dr. Brodsky and Dr. Sueta give their patients supplements of magnesium lactate. Both magnesium lactate and magnesium gluconate are easily absorbed and are less likely to cause diarrhea than magnesium oxide and magnesium hydroxide, the other forms of magnesium. (Magnesium hydroxide is found in Phillip' Milk of Magnesia, Mylanta and Maalox.)
`I generally give my patients either Slow-Mag or MagTab, up to about six tablets - 450mg - a day,' Dr. Brodsky says.
`Magnesium affects heart muscle contraction, and magnesium deficiency can cause abnormal heart rhythms and/or irregular beats,' Dr. Sueta says. `Adequate amounts can help prevent constriction of isolated blood vessels, which can affect the blood supply to the heart muscle.'
Apparently, magnesium also offers protection during a heart attack. `Magnesium deficient animals have greater tissue damage after heart attacks than animals getting enough magnesium,' Dr. Weglicki says.'' (5)
``Magnesium also appears to be able to also affect the nervous system by regulating the release of hormones, which occurs due to many different forms of stress.
However, this hormonal activity is disrupted in fibromyalgia. Often there is
an exaggerated release or high levels of noradrenaline (also known as norepinephrine).
However, magnesium appears to play a role in regulating noradrenaline levels.
For example, in the following study on mitral valve prolapse, magnesium supplementation not only relieved symptoms, but also reduced the high level of urinary noradrenaline excretion.''
Note: the above was old research,so some links might not work. It was all a "cut and paste" from the internet many years ago.
Ancora Imparo.
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trueblue
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Thanks for posting this Jelly. (I'll take a look for the book.)
I have both and have been majorly symptomatic for years although my older echo (14 years ago) only showed mitral valve redundancy with no regurgitation... the one from last week shows prolapse and leakage.
This is an acquired condition in my case, I believe, no one in my family has it.
I asked the cardiologist about the dropping bloodpressure and he suggested staying hydrated and drinking gatorade. I suspect that will not be sufficient; nevermind the sugar, pfffft.
Lymed ~ I'd be interested in reading your file.
BTW, Marnie's post was not there when I posted, Thanks Marnie.
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AliG
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Hi True!
I drink Glaceau Smartwater, electrolyte enhanced water. Glaceau.com NO SUGAR, no sweeteners, no flavors!!!!
I'm not fond of a lot of sweetness (except on odd binges). I love the stuff. It quenches!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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Great Post, Jelly! Thanks!
Marnie,
I have a question regarding your post. Would it be helpful to consume a large quantity of sugar or consume alcohol, reduce both Bb's (& unfortunately our) cell walls and then hit them with ABX?
I think my cocoa binge followed by increased ABX may have bought me 4 days of fully-functional brain. Unfortunately it's backsliding again. I was still able to read & digest most of your post. This is still a marked improvement over where I've been lately.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Jellybelly
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One of the meds recommended was a beta-blocker in just a low dose. I was given a beta blocker to slow my heart down about a year and a half ago. It has become one of my favorite meds, probably the one I am least willing to give up at this moment.
Anxiety was getting to be a real problem for me. I have come to to realize even before reading this book that anxiety was a MAJOR issue always, but it was so constant, I guess I thought it was normal??!!
What the beta blocker did, besides slow my heart down was calm some of my anxiety. I thought I seemed to notice a pattern when I would take it of less anxiety so I did a bit of research and found that beta blockers can do that. Then I read in this book, that they are actually really good at doing this in our case.
The beta blocker also seems to relieve some of the chest tightness. I take 25 mgs 2xs a day of Lopressor.
Posts: 1251 | From california | Registered: Apr 2005
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Marnie
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I wonder if we could use lecithin...choline and phosphorus as a lure.
(In addition to Mg citrate/orotate and B vitamins.)
Sort of modifying Valletta's patent, "Magnesium for autoimmune". Timing is CRITICAL.
He used Mg pyrophosphate and sublingual B6 to cure RA, ulcerative colitis and invasive bowel cancer in months.
Mg pyrophosphate is not available OTC, so can we not sub another "phosphate"...as in lecithin?
This is all tied into C-terminals and N-terminals.
Pyrophosphate MIGHT disrupt the C-terminals, freeing iron - carrying oxygen...neither of which Bb likes.
Or...if we breakdown N-acetyltransferase...do we free up nitrogen to combine with oxygen -> NO -> vascular dilation to deliver nutrients (including oxygen)?
See my post about cats?
They have less C-acetyltransferase and less NAT enzymes and are less likely to get lyme.
Impact on those enzymes too via far infrared (which looks to impact amylase and lipase also)?
Forget Foxamax, it doesn't work. (Man-made pyrophosphate)
Neither does methotrexate which DEPLETES choline.
(Find the choline and lymphoma links.)
The side effects of Humira (reduce TNF alpha signaling) include TB and cancer.
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klutzo
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Re: Hydration - all MVPers should drink a quart of pure H20 per 50 lbs. body weight daily. If your BP is low, mix a little salt in there and sip it all day.
I am one of those rarities with dysautonomia and high BP, so I can't do the salt, but my high BP has saved me from feeling faint......even though my systolic BP drops 24 pts. when I stand, it is dropping from too high to normal, so I dont't pass out.
I do agree about the benefit of recliners for this. I would not be without one and always put my feet up when I am sitting.
KENDRICK - 40% of MVP's are missed on echocardiogram because ducks don't tell patients that they must spare fluids for 12 hrs. before the test is done. Many of us are thirsty all the time and always drinking, so it is no wonder tests come out normal.
As a result,an MVP can be missed. A well-hydrated valve will function much better, hence the need to drink the amt. of H20 I listed above to help if you do have MVP.
It took 12 years of suffering from MVP/Lyme induced panic, and FOUR echocardiograms for my MVP to show up! Different Ducks I was sent to kept saying my sx sounded like they must be MVP, but the tests were always negative.
Then I read about the need to spare fluids, and asked the current duck for another Echo test. I drank as little as I could stand for 12 hrs. beforehand, and lo and behold, there was an MVP, regurgitation and all! I don't know why most ducks don't know this, even Cardiologists. Maybe because there are no drugs to be sold from knowing it.
JELLY - My husband is 6'4" tall and weighs 170 lbs. dripping wet! He has a narrow, barrel shaped chest, huge hands, and size 13 1/2 EE feet! Classic shape for inherited MVPS. He looks exactly like his great-grandfather on his mother's side.....they could be twins, so that is where I think it came from. His mom also had a lot of palpitations, but never had it checked out.
However, regarding the physical appearance of an MVPer, sometimes other illnesses can fool a person. I have a non-Lymie female friend who is 6'1" tall, narrow-chested, has MVP, scoliosis, IBS, and endometriosus so bad she had to have part of her bowel removed, yet she is obese anyway. She does have the inherited type of MVP, but she also has severe thyroid problems that are not adequately treated to the point that she has no eyebrowns or eyelashes anymore, and this imbalance has also made her heavy.
Beta-blockers worked for me for 7 yrs. then stopped working. When that happens you may need to switch to a CA channel blocker like I did. I now take Verapamil ER (slow release). As Marnie said, Mg is needed, and is also natures major CA channel blocker! The problem is getting it where it needs to go.....
MARNIE - My serum Mg is always good. I can't get my duck to run a red cell Mg. I've been taking Mg citrate from 650-1200 mgs. in many small doses daily for over a decade now, but still have major MVP sx. I take B6 and choline. Right now I am on 880 mgs. daily. (I change the amt. as my bowel tolerance changes) I use citrate because it is absorbed well, and also helps to control GERD. What else can we do if we can't afford holistic docs who give IV Mg?
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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AliG
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Marnie,
Another post of yours I was reading about the effects of alcohol on the cell walls?
What if you time it so that you lure the Bb out with the Lecithin & Mg, use sugar too. While they're out fermenting the sugar, hit them with a couple of shots of Vodka to weaken their defenses and then SLAM THEM WITH ABX!!!?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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northstar
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Oh Ali, I LOVE your protocol !
When are you doing studies? Will you pay participants? Or should we pay you?
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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AliG
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Wait a minute!
I think I misread. Bb moves away from alcohol, alters it's cell wall. The Bb alters it's cell wall, not the alcohol alters the cell wall?
Phooey, I thought I was onto something! Sorry, Northstar.
So then maybe just delete the vodka?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Jellybelly
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So Lymednva, you seem to have dysautonoia bad, but very litte if any MVP. Actually that is what the book brings out, that the degree of MVP does not particularly match up to the degree of dysautonomia.
Like Klutzo brought out, your echo can look entirely different from one test to another depending on the severity of the dehydration at the moment. I think it is important for people to understand that.
Sugar is also a big no-no. I'll have to look at the book again later, but I think it had to do with insulin spiking from the sugar rush and then having it plummet afterward. That plummet causes the brain to once again call for the adrenalin rush in order to pick us back up after the crash. I'll tweak this explanation later if this isn't exactly right.
Alcohol is also a negatory, because it dehydrates....SORRY AliG. But...if you do cheat, I guess a margarita with a gob of salt on the rim would counter the dehydrating effects. Works for me Posts: 1251 | From california | Registered: Apr 2005
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Marnie
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You need to remember something...this is how Flagyl works.
It blocks the P450 enzymes...and prevents alcohol from being broken down.
Alcohol PLUS Flagyl = alcoholic poisoning.
Urgent...see my post and links re: NO and ASA!!!
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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AliG
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So would that mean Flagyl+(Spirochetes+Sugar)=Alcohol Poisoning?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Marnie
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Spirochetes alone are fermenting sugar to ethanol.
How to tactfully say this...I'd love to know your blood alcohol levels even IF you haven't tipped a few.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
My LLMD said up to 40% of population can show up positive for lyme but not be sick. So..... being that i have more symptoms of dysautonomia than lyme and i have a murmur.....is it possible i ONLY have dysautonomia??? And lyme is not the actual cause?
And if not, which one triggered the other?
I CANT tell you how HEAT intolerant i am. Even in the winter with a tank top on. I feel faint all the time. I do NOT sweat a single drop even during exercise or heat exposure. I have chronic anxiety, chronic exhaustion, dizzyness, head pressure, balance probs, achy muscles, motion sickness... and many many other problems.
Sad thing is that if this isnt Lyme, but straight up dysautonomia...there is AGAIN no treatment for that either right?
No matter what you call it...CFS, Lyme, Dysautonomia. Im screwed. Sorry....just getting tired of being so darn sick.
Posts: 160 | From california | Registered: Dec 2006
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posted
by the way....my 3 year old had his physical yesterday with blood pressure 92 over something...i dont remember the other number. Isnt 92 low? I just worry cause im always light headed and get pale and stuff. thx
Posts: 160 | From california | Registered: Dec 2006
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Jill E.
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Thanks to this great topic, I just bought the book on Amazon.com.
For anyone who is interested, you can buy it new for $10.17 or used starting at $8.20.
The authors are James Durante, Cheryl Durante and John Furlasse.
When I looked up the book on Amazon, there were a couple of other books on MVP also.
Thanks again, JellyBelly, for posting about this book.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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lymednva
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I haven't been able to tolerate alcohol for almost 15 years. Never did drink much to begin with. Of course I've been compensating for this for over 30 years.
What I then thought was morning sickness I now realize was dysautonomia. I always felt better when I was lying down, so I did that for at least the first three months of each pregnancy. I have three grown kids.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Hubby has a MVP -- probably born with it. Has known about it since age 5 or so. He has only had very slight symptoms of dysautonomia since contracting Lyme.
I have always felt that the 400mg CoQ10 hubby takes has kept the Lyme from affecting his heart.
He had a tilt table test very early on (1st year of illness) which was normal. At the time he was having fainting episodes. Could not go from the bed to the bathroom in the morning without passing out 2 or 3 times. Low dose Cortef (5 mg -- tests showed he actually needed 20 or 30 mg) and low dose Florinef stopped the loss of consciousness episodes within a couple of days.
Stopped these meds about 6 months ago and immune system has been really struggling since then.
In my opinion, adrenal fatigue is a greater cause of dysautonomia than MVP. Lyme can obviously cause adrenal fatigue. Lyme could also directly invade the heart tissue and cause MVP as a result.
Hubby has been on Holter monitors for 24 hours 2 or 3 diferent times to see if MVP or other heart abnormalities are contributing to seizure-like episodes and sudden dry heaves. Have never found a connection.
I read somewhere that the heart and stomach are formed at the same time during gestation. Hubby has had lifelong G.I. issues -- he has always felt that there was some genetic problem or birth defect behind his G.I. symptoms.
Before Lyme disease hubby took a low dose beta blocker once that helped greatly with G.I. issues. But then he developed cold hands and feet and his B.P. went too low to continue on the med.
The heart and stomach are both controlled by the vagus nerve and acetylcholine is the primary chemical which controls peristalsis.
One other interesting fact. Hubby had a PET scan around the same time as the tilt table test. An independent radiologist concluded that the Hypothalamus was overactive. In my opinion this was evidence that the Lyme was affecting hubby's brain and an additional reason for the adrenal fatigue was from the Lyme affecting the hypothalamus.
The sound of a MVP murmur does not necessarily reflect how severe the MVP is. Hubby's sounds much worse with a stethoscope (he says it sounds like a washing machine) than it shows on an echo. Cardiologists rate MVP on a numerical scale.
I remember one ER visit to a University hospital where the neurology students were more interested in listening to hubby's heart murmur than in trying to diagnose his tremors/myoclonus/seizure-like episodes. Some of them had never heard a MVP murmur before.
Bea Seibert
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klutzo
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Bea - You may be interested to know that the ANS forms at the same time as the Mitral Valve, and this may be relevant to the development of MVPS.
Klutzo
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Truthfinder
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Thanks for the additional info, Lymednva and others.
Wow, I sure would not want to go on a steroid, though. Yikes! Not good for Lymies.
My heart issues didn't start until about 20 years ago when I began developing other ``Lyme'' symptoms (although a heart murmur had been detected many years before).
Hmmm. Is this a ``chicken or the egg'' question, or simply confusing the symptoms of two different, unrelated diseases/disorders?
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Aniek
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quote:Originally posted by panicbegone: by the way....my 3 year old had his physical yesterday with blood pressure 92 over something...i dont remember the other number. Isnt 92 low? I just worry cause im always light headed and get pale and stuff. thx
It looks like 92 is about the 50th percentile (about average) for a 3 year old. But if you are concerned, ask you pediatrician.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Jellybelly
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Bea, from what I get from the book, it is NOT the MVP that causes the dysautonomia, but rather the dysautonomia causes the MVP in these types of cases. It is the dehydration associated with dysautonomia that acully causes the heart to kind of dry up and become to small for the size of the Mitral Valve, causing it to flap.
Dysautonomia doesn't effect the heart any more then really what you would see in your husband's heart now. He has MVP, that is the main problem in dysautonomia when related to MVP Syndrome. There is really no other problems structually expected with dysautonomia. Other valves may eventually end up leaking.
Your husbands passing out is not slight symptoms of dysautonomia. That is MAJOR, maybe I am reading what you said wrong.
You said
quote:He had a tilt table test very early on (1st year of illness) which was normal. At the time he was having fainting episodes. Could not go from the bed to the bathroom in the morning without passing out 2 or 3 times. Low dose Cortef (5 mg -- tests showed he actually needed 20 or 30 mg) and low dose Florinef stopped the loss of consciousness episodes within a couple of days. Stopped these meds about 6 months ago and immune system has been really struggling since then.
That Bea is pretty much the test, and treatment for dysautonomia. His passing out, particularly in the morning is very classic of dysautonmia. After having been laying down for so long, the nervous system struggles to bring all functions back to normal levels for someone who is now standing or sitting upright.
Struggling since stopping the Florinef sounds like the low blood volume has returned, along with all of the other things that happen. That's what the Florinef does, it increases the blood volume, then you get less adrenaline because the brain is no longer trying to compensate for lower oxygen levels. The constant adrenal production causes the adrenal fatigue you think is the cause. You are kind of right, but it is the dysautonomia that is causing the adrenal fatigue.
It causes it because our parasympathetic nervous system is constantly overstimulated by adrenaline. Our adrenals are constantly producing because we are in that constant low blood volume condition. The bodies response to that is MORE adrenaline, a viscious cycle until the adrenals are shot. Adrenal fatigue . My adrenals are shot, and I am dropping below normal at certain times of the day and during stress.
All of this stuff is related without a doubt. The purpose of reconginzing the dysautonomia is so that people can try to do things that might make us more comfortable while fighting the Lyme, which may be the stressor that sets the whole dysautonomia off in the first place.
Posts: 1251 | From california | Registered: Apr 2005
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I am pretty sure I have the book you mentioned somewhere -- have not read it since Lyme diagnosis. Maybe I need to dig it out again.
Just got back from a short ER visit with hubby -- only 2 1/2 hours. Thought the paralytic ileus was back, but abdominal CT was normal. No explanation for back and stomach pain. Dilaudid is hubby's new friend.
Hubby has had so many amino acid and neurotransmitter tests over the years although none recently. For awhile we were kind of in info overload. Now he has new and different symptoms with no tests and very little treatment and I just don't know what the next step is.
Hubby was tested for an adrenal tumor once to see if that was causing his symptoms.
You wrote something about low oxygen and Florinef I think. Hubby's PCP is convinced that hubby has a CSF fluid leak. I thought the more likely problem was low brain oxygen which would show on a SPECT scan. You have pointed out another possibility.
When the massage therapist did a certain adjustment on hubby's back which is supposed to increase CSF pressure and thus increase oxygen to the brain it stopped the tremors/myoclonus. Also stopped back and stomach pain. The last time I tried doing this adjustment it helped temporarily and then hubby ended up in the hospital in a few hours with the paralytic ileus. Have been afraid to try it again.
Hubby has an appointment next Tuesday 1/23 with a new LLMD neuro. It looks like it may be a very interesting appointment if I can get some notes typed up that will make sense to a doc.
Bea Seibert
P.S. Even with all the loss of consciousness episodes hubby's B.P. was basically normal -- did not drop significantly when he went from lying down or sitting to standing.
Hubby has borderline low sodium (for last couple of years) -- even with elyte solution in drinking water and while on the Florinef it didn't improve. Maybe the dysautonomia is the clue that I have been overlooking.
As hubby likes to say "The key lies with Charolette." That is a quote from the movie National Treasure. I do think for hubby we already know most of the puzzle pieces, but we just need to fit them together in the right sequence.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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No you didn't read what I wrote wrong. Maybe I am guilty of what I always accuse hubby of. I always tell him not to believe the docs if he knows they are wrong.
I vividly remember arguing with several docs over whether hubby was actually unconscious or not. My word against theirs because most episodes were either first thing in the morning or even when it happened in the ER or hospital of course he had regained consciousness by the time the nurse or doc got to the room. I remember at least one nurse accusing hubby of faking his symptoms for my benefit. These were simple faints that happened several months before he actually developed the seizure-like episodes.
With a normal tilt-table test the docs convinced me that dysautonomia was not a significant issue. Interestingly the only thing that happened out of the ordinary during hubby's tilt table test was an episode of tremors/myoclonus at one point.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Jellybelly
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up
Posts: 1251 | From california | Registered: Apr 2005
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Marnie - I know much of the supplimentation that you advocate will address the next issue I will bring up but: How many of us have actually had our adrenal function looked at? We found that mine declined about 5 months ago, along with this then my thyroid also started to go. Many of the symptoms that I have read on this post can have a relationship to adrenal stress. I am not pinholing that this is the only problem but in my opinion it is not looked at enough.
Just google adrenal exhaustion - you can find issues with chronic infections, cold issues, blood thickness issues, heart issues and so on.
My LLMD and homeopathic doc, who also does energenic testing, work together to fine tune the primary system of disfunction and needed support.
I don't want to simplify this process but my homeopathic has seen a lot of endocrine issue with lyme infected clients. Adrenal function is the first area that he tries to balance out. My LLMD follows up with all med tests for validation and then they work together to find the primary corrective therapy that is the least invasive.
Much of the time if they get the adrenal corrected the thyriod and the rest come back up to balanced levels. Much of the therapy involves re-building the endocrine system with desiccated and PMG products made by Standard Process. Any other hormone therapy is done with great caution and only when there is a dire need to take stress off a gland so it can heal and to get the system functioning again.
I think that one of the biggest problems that we face is trying to find out what are the master issues that need to be corrected and the proper support. I have been in treatment over 2 years and it appears that we have been able to go only so far to remove my infections. With what I found in the last few months, with such a big issue with my adrenals, that it doe not surprise me why treatment has stalled.
And Back to GIGI statements, Metals and pesdicides often are also hitting the endocrine system
Posts: 582 | From milwaukee wi | Registered: May 2005
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Jellybelly
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Not Marnie, but I can give some input here, as I do have adrenal fatigue, very, very low and dipping below normal in the second half of the day.
Thing is, this is "part" of the domino effect. The adrenal fatigue is caused by stress, usually. In our case the stress is chronic infection. The chronic infection seems to be at the early part of the domino chain, but may have gotten it's foothold because of some other stress, like, accident, illness, emotional stres, etc.
The adrenal stress then can go off onto a certain branch of the domino chain, causing all sorts of problems.
Then as the infection enters the central nervous system which is another branch on the domino chain it causes all kinds of other problems.
Treating the adrenals is really important. No doubt, but it is just one area. You have to look at the whole picture. You may feel better for awhile treating just the adrenals, but the infection will continue to rage on and you will get worse over time.
That has been my experience in dealing with this for so many years and then finally regaining the majority of my health. I still see little spirts of progress, when I realize there is still another branch to the domino chain I haven't addressed yet.
Posts: 1251 | From california | Registered: Apr 2005
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Jelly - don't get me wrong, I agree with you. The infections still need t be treated but also having adrenal issues makes it that much harded for the body to keep the infections gone. Adrenals play a big part in the body's production of antibodies against the infections. If our immune system can not create enough antibodies the infections will not be held in check.
I know of one person who's whole adrenal system crashed, I mean almost dead. She would pass out all the time. It took 2 years of replacement hormones to where she could do anything. durring that time she also had a lot of chronic infections, none of the lyme stuff but other infections. She is great now as long as she keeps up the replacement therapy but those 2 years were like living death. All of her muscles burned hot but at the same time was ice cold. All of her joints were inflamed with pain.
Posts: 582 | From milwaukee wi | Registered: May 2005
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WildCondor
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posted
Good post! I hadn't seen it in January...good work!
Dysautonomia was always my worst symptom...and it can be tough to figure out and control. My Neurally Mediated Hypotension was cause by Lyme and babesia. Treatment for the infections which triggered the dysautonomia have made a huge difference, as have supportive measures (to control symptoms) such as beta blockers, florinef, zoloft, xanax etc.
Tilt table testing was key for me, and it may be a good idea for many of you since treatment of the symptoms can make life much easier. If anyone needs a Lyme literate cardiologist in NY, just email me!
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![[dizzy]](graemlins/dizzy.gif)
I always felt better when I was lying down, so I did that for at least the first three months of each pregnancy. I have three grown kids.
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