Discussion in 'Fibromyalgia Main Forum' started by LadyCarol, Jan 27, 2009.
Interesting article, comments please ?
i agree anchor, i think a lot of us on here have the heart issues, i know i do. while i am not bed bound, im sure house bound and cant do much at all, have lots of things going on with the heart. sometimes im scared to think about it. so i just try not to. my next dr visit, they will have reports from a holter monitor and mri i had done a few months ago.
i have been told i have mvp, and this past marchi had a hysterectomy, and had some problems with meds that made my heart go wacky, the dr finally came in & listened to the heart, she was very surprised to hear a " Pretty good Murmur" as she said it. so i know whatever the thing is with the heart & cfs, mine has gotten worse!
i try to muddle through all the mitochondria stuff on here, but it is sooo long and my brain fog is so bad i cant get much out of it. i dont even know where to start talking to the doc about it. i am on the verge of just throwing my hands up & just lay on the couch, at 43 it sux but i honestly dont know what to do to help myself anymore. i keep trying supplements that i think might help. like i keep saying, dang this is 09!! it's time for a breakthrough. they know why we have the heart problem, so surely they could do something! maybe more people will respond and give us some new insights on how to feel at least better! keep surfing the board anchor!! i sure will, maybe we will find something that will help us!! good luck, Kat
Do you experience sudden breathlessness upon exertion, that then takes many minutes to restore (i.e. 5 to 30 mins), and if so could it be related to the heart issues mentioned in the article ?
I have worn the heart monitor several times and was diagnosed with SVT. My heart was raising even in my sleep according to the monitors. I would have a heart rate of around 120 + just sitting and doing absolutely NOTHING. It was constantly raising, constantly....My doctor couldnt even understand how I had not been to a doctor about it yet or how one had not discovered this. I just assumed when I felt it racing that it was from having mono and from being severly sick for a year and a half at that point. I was lucky to even know my name at that point....lol.....I also had abnormal ekg's, t-wave flatenings and MVP. My echocardiogram also showed damage to my left ventricular wall and hypertrophy and some other left ventricular muscle damage....
I began to feel much better was I started beta blockers and no longer have SVT but still have abnormal T-waves and abnormal ekgs and MVP. Hopefully they will improve as my treatment continues.I had not had another echocardiogram to assess if conditions have improved. BTW, I am young...way to young for this stuff to happen normally...
Question: DOes have have MVP and take any sort of medication for it?
[This Message was Edited on 01/28/2009]
This is the first article that really showed me how to start relieving symptoms with supplements - that they were the only way to successfully manipulate a sick body.
This is one of the things that happens, but ask yourself why. The why is simply because we are being starved of these nutrients just as if we were not eating. It is because digestion is not functioning. There are many reasons for this, but what happens is that we are starved for nutrients and depending on what kind of digestive malfunction we hare having will dictate what kind of symptoms we will develop. The bacteria in the guts produce many of the vitamins we need, the enzymes we need, the neuropeptides and other components of the immune system, and they keep each other in check.
Once this gets disrupted, a domino effect of other digestive maladies occurs and then your various metabolic systems start falling apart from lack of the substances they use to function. It is basically nutrient deficiencies caused by bad digestion and dybiosis. This directly affects the liver and all its functions, too. Let this go on, and it will just get worse and worse. Once you have gone over the edge, the body won't be able to digest the nutrients it needs to make repairs and then you're royally screwed.
Also because of improper digestion of proteins, the blood cells will stick together and not transport oxygen freely. They will still hold oxygen, as is evident from the finger monitor that doctors put on you in the hospital, but if they are stuck together like stacked pizzas, they can't transport the oxygen because they hold oxygen on the cell surface. That's why RBCs are shaped like they are - to maximize surface area. If they are stacked, the oxygen is trapped. The mitochondria are what use the oxygen. When we breath, it is really the mitos that are breathing. If they are starved of oxygen and nutrients, then we have fallen and we can't get up.
You have to figure out why you are not processing nutrients, whether it is dysbiosis, intestinal hyperpermeability, liver problems, lack of digestive enzymes, lack of stomach acid or, as in my case, all of these. You correct these root causes (which also includes the immune system since most of its components are produced in the intestines) and you will correct the metabolic functions that are messed up. It will take a while, require willpower of steel to eat ONLY healthy food and will require supplementation to make up for the nutrients you need while you are healing. Digestion will need help to fix, maybe much more than just a healthy diet depending on how bad off you are.
I was deathly ill for 5 years and now I'm getting over it. It's not impossible, but it is to a medical doctor. You just need to find an expert. Get a better idea of what to do from beatcfsandfms.org. Articles like this "heart disease . . ." are good to help with what supplements you need to help you get by, but they are still "band aids" that do not address the root cause - a bad situation in the guts. And DO NOT expect your medical doctor to understand ANY of this - they went to school to learn about drugs and surgery, NOT how to fix bad digestion.
I should add that when I started taking tons of supplements, I took these and went from being totally bedridden to being able to walk around. If these are some of the things your body is starved for, then you will benefit from them. They are harmless, you don't need to have a test to see if you are deficient in coq10 or magnesium. The doctor's tests for these kinds of deficiencies are notoriously unreliable, anyway.
[This Message was Edited on 01/28/2009]
I don't know that it was a heart problem any more than any of this is any organ problem. In retrospect, I was basically starving to death and didn't know it. I felt so weak at my worst bedridden point that every breath and heartbeat felt like my last. It felt like it was a struggle just to stay alive. I felt like I could barely breath and my heart could barely beat. I was too scared to get out of bed and couldn't anyway. I thought trying to push myself would push myself right into a heart attack. It was just beating so weak and strange all the time.
I remember several times that I was so weak, I couldn't turn over and I couldn't work the tv remote. I was just waiting to die. I kind of wanted that to happen after a couple of years of this, it was pure torture - no terrorist could have conceived of anything worse than this if he had planned it for 10 years. I'm glad I hung in there now but it was a horror as black as midnight.
If you don't have gut symbiosis (a working together of the different bacteria in the gut), you can get seriously messed up. And I was seeing a digestive disease specialist at the time. So that was a majorly bogus title for his practice. How could he fail to diagnose something like this? I can only hope he ends up with what I had one day. He told me I needed a psychiatrist. He needs that and he needs some good forceps to help remove his cranium from his rectal canal. Though he'll probably still have a good case of cranial rectal cork syndrome, regardless. I hope everybody who finds out they have gut dysbiosis or intestinal hyperpermeability sues their first doctors for not diagnosing it. That's the way you change things, by making it expensive to do the wrong thing.
This article was critical for my family to start taking my illness seriously. I was already so ill I could barely stand up, but everybody kept optimistically saying, 'When you've got some rest, things will be better.' This article gave us a thorough explanation for what was going on in my body and we were able to start taking steps to address a lot of the blood-flow and heart symptoms.
Although... I was sent to 3 different cardiologists, had innumerable ECG's and Holter monitoring, and each cardiologist told me I had something different wrong with my heart, and that whatever the other guys had told me was wrong wasn't 'a serious problem'. The solutions they offered were pretty much useless too. I am healthier overall - having finally addressed my electrolyte imbalances and my gut disbiosis (a work in progress), and added hawthorn to my daily supplements - to the point where I can walk around my house and yard with the help of oxygen. Unheard of two years ago, believe me!!!
But my heart is still drastically weak and I get quite sick at the slightest effort or emotional strain. This, I believe, is because the mitochondria are so damaged. There are more mito's in the heart than any other muscle group. I am trying a course of d-Ribose specifically to help my heart mitos, and can only hope that helps. I have just started trying to digest Dr. Myhill's new paper on mitochondrial dysfunction and it looks like it might be just as important to my understanding of my body as Dr. Cheney's paper above was two years ago.
Anchorholds, you wrote:
Do you remember where you found this information? I have been taking a small amount of CoQ10 recently as an adjunct to my heart-health regimen, and I don't feel well. But I never thought that it might be the CoQ10. Maybe I will stop taking it for a week and see if I feel better.
It's horrifying what to hear what some of you have been through and are still going through. It's rare to find a doctor who has a handle on this illness, they seem to rely on the patient providing education on their behalf so they have half a chance of being able to understand something of what is happening.
When I get the breathlessness it's like I'm breathing in faster and faster until maximum breathing rate is reached, and it's as though the oxygen isn't getting through. The heart rate is low and steady around 40 to 50 per minute, no energy or strength, just totally weakness throughout the body, it feels like the very source of life itself is flowing out and at anytime the end could come. Then slowly the breathing rate slows down until after x minutes it returns to normal and only then is it possible to move and sit-up, trying to walk produces leg weakness and wobbliness which can last for anything from 2 minutes to umpteen hours it varies so much, but it leaves behind mid and upper chest soreness and discomfort as a result of the rapid breathing which can take last for several days or weeks.
Does the above sound familiar to any of you ?
[This Message was Edited on 01/29/2009]
I have read that Sieverling article years ago, but then I was barely concious most days, much less able to think about what it meant for my own situation.
Yeah, that article shook up everybody, me included. We had never thought that my simply 'being tired' might actually be an illness that was damaging my major organs and would kill me some day. I am doing a lot better now and my family is a lot more supportive.
I might be one of those people who can't tolerate Coq10, at least right now. I'll take it out of my regimen for two weeks and see if it makes any difference in my daily feeling of wellness. So many other things affect me on any given day that it needs at least that long to see how shifting one piece of the puzzle cycles through all the other fluctuations caused by weekly B12 shots, kids visiting with fabric softener on their clothes, hormone cycles, and even the weather.
To the lady who asked about breathing hard and feeling like it's not getting in: when breathing heavily, there's a point at which your body can't accept any more oxygen because there's not enough carbon dioxide to trigger the mechanism (very simple explanation). When this happens to you, sit quietly and breathe into your hands for 30 seconds or as long as you can stand it, and then take deep breaths of room air again. It might shift the carbon dioxide ratio in your blood enough to let the oxygen release to the cells.
I went into great detail about this - giving the mitochondria the nutrients it needs and Cheney's warning about having to have the proper antioxidant enzymes in place or you will crash and burn. I just bumped the thread, it's called "Mitochondria's role in PEM (crash) and how you can reduce it." It isn't just coq10 that could cause a problem, it's anything that may jump start the mitochondria. If coq10 is making you feel bad, then I would consider that there is a problem with the antioxidant enzymes.
What happens is that your body stops producing energy because it doesn't have the antioxidant enzymes necessary to scavenge the highly reactive free radicals that are generated as byproducts of energy production - superoxide and peroxynitrite being the worst. Peroxynitrite it so bad, it can cause tissue damage so Cheney is postulating that the body shuts down energy production essentially just to protect itself. If it continues to produce energy, peroxynitrite will build up and cause damage. I was taking some pills called Extra Energy Enzymes or something like that, it's in the thread, that are the precursors to the antioxidant enzymes superoxide dismutase and catalase, which scavenge superoxide and peroxynitrite. They worked very well for me. Since that day I started using them, I've been able to read all day long and stay up later. And they dispelled a lot of my brain fog - I can think much clearer and find words easier. I still have some memory problems but they're getting better.
The supplement company Farr uses, is Biotics Research. They are pharmaceutical grade supplements, and most of the ones I'm taking contain the antioxidant enzymes superoxide dismutase and catalase. This company recognizes the importance of these enzymes.
And you know what's really sick about this whole heart doctor thing? As many of us that have digestive difficulties, you know that some of us are sickeningly low on magnesium. But the doctor's tests for these kinds of deficiencies are useless. I wonder how many people have heart attacks due to a simple magnesium deficiency? The coroner certainly isn't interested in that, it's just listed as "heart attack". We could be low on nutrients like coq10, magnesium, calcium or any other thing the heart needs badly, and they would still be trying to find drugs to give us. Doctor's will not treat simple nutrient deficiencies. We're on our own for that. I wonder how many of us have heart problems that are the result of prolonged nutritional deficiencies? I wish we could sue all doctors for these kinds of oversights. Muscle uses magnesium to relax and calcium to contract. So the heart kinda needs a steady supply of these and other nutrients all day long!
I still have a heavy metal problem. And it's supposed to go along with the bad bacteria in the guts. I just got my test results via email. I haven't discussed them with Farr yet, but almost all of the bad bacteria and yeast are finally gone. There is only little rat left. It's called alpha haemolytic Streptococcus and it's occurence is 4+. This little illegitimate child has been there as a 4+ on all 4 stool tests I've done in the past year. He's particularly resilient and nasty. But so am I, so he'll have to go eventually. But all the rest are gone. It only took 10 months! Now I think I'm left with some liver problems that may take even longer. But I had a nasty hep c infection for I don't know how long and the liver biopsy showed some scarring. So I'm doing pretty darn good for the shape it's in. My guts were my main fixable problem, which caused more distress for my poor liver with the permeable intestinal lining letting toxins and undigested food into the bloodstream. My poor liver and kidneys just kept working though, they didn't go on strike and let me die. Wish I could have given them a Xmas bonus or something - they've certainly earned it.
I know what you mean about those feelings. I had chest tightness and discomfort for years, most of it downright terrirfying - like death was right there knocking. When that drags on for weeks, then months, then years, your thoughts start considering ways to make it stop. You have lasted that long with the torture but thinking about living the rest of your life in torture, which may extend into several more decades, is just not acceptable. Phew, I'm sure glad THAT'S over with! What a ride.
Anyway, I had lots of low oxygen days. It felt like I was drowning just a little or holding my breath even though I was breathing normally and my heart was beating. It was awful, I just couldn't get enough air. I even bought a tank of oxygen but that made me feel funny. It took a long time to realize that it was the RBCs sticking together. I did my own little experiment with some oxygenated water and looking at my own blood under a microscope. I started drinking oxygenated water that a friend of mine makes himself with this complicated machine and it solved that problem. I did a thread about that, too. It's got oxygenated water in the title, I'll find it and bump if you want. I believe it worked by restoring the negative charge to the RBCs so they wouldn't stick together, which I think can also be a factor of undigested protein in the blood. I haven't had any more dying feelings or heart issues (other than some palpitations) or any major symptoms other than I still get too tired. I can do much, much more than before this gut fix, but I still have things to fix. I think they're all liver related now.
The worst of all this was when I thought I was dying from whatever, including low oxygen because I couldn't seem to get a decent breath, I would go to the ER, convinced that I was in such bad shape, they would be able to determine something that was wrong. But nope. They did a bunch of tests, said I was fine, and recommended a psychiatrist. Simply because they couldn't find a drug to give me. I know now that I had: rouleaux formation of RBCs (they stick together), severe gut dysbiosis, intestinal hyperpermeability and liver congestion. There are not drugs for these, that's why they insisted there was nothing wrong. I hope they all get an overabundance of alpha haemolytic streptococcus where the sun don't shine.
It's not hyperventilation that's happening to me, I don't get any of the symptoms that relate to it, no lightheadedness, no anxiety, no panic attack, palpitations, etc., breathing into my hands or taking deeper breaths to try to control the breathing has no affect at all, I have no control over what is going on inside.
Interesting to hear about the red blood cells sticking together. I also have leukemia which was diagnosed a couple of years after the CFS/ME started, so it's possible the leukemia is interacting with the CFS and aggravating the breathinglessness. I've not had any chemo as at best all it does is delay the inevitable and would most likely trigger a chain reaction of other health issues as a result of the underlaying weaknesses that CFS causes. In the meantime I've increased antioxidant intake significantly in the hope it will help with the breathing and clobber the leukemia.
Catseye, were your stacked RBCs due to Rouleaux Formation ?
If so then the cause is due to inflammation, and once the inflammation is rectified then the stacked RBCs will also be rectified.[This Message was Edited on 02/01/2009]
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