Why do cardiologists miss diastolic cardiomyopathy?

Discussion in 'Fibromyalgia Main Forum' started by SpiroSpero, Sep 10, 2008.

  1. SpiroSpero

    SpiroSpero New Member

    Hi all,

    yesterday I had an appointment with one of the best cardiologists here in town. It takes half a year to get an appointment, he has written lots of scientific papers and people from all over the world visit him for heart operations.
    He ran an echocardiogram on me but of course it was normal. I asked if they have impedance cardiography but he said no.
    He also said that my cardiac output is normal but if I have anything I need to know about it I can email him.
    So this is what I'm going to do BUT I need your help first :)

    I read all the Dr. Cheney papers and I know that an echocardiogram is not useful in measuring Q but I don't know why.
    I asked the Prof if my heart fills properly and if it pumps properly and both times he said yes.
    He says it's the most efficient form to diagnose reduced cardiac output.
    So does anyone know the difference between echocardiogram and impedance cardiography (I know...a small electrical current is passed through the chest) regarding Q? Why is impedance cardiography better?
    He showed me a sonogram picture and told me that they measure the distance between one heart side and the other before and after filling and so know how much liters the heart approximately pumps.
    Why do we miss Diastolic cardiopathy with the one and not with the other?
    The Prof said: Filling and pumping are normal in me! Dr Cheney says that with Diastolic cardiopathy the filling is abnormal. Who is right?

    [This Message was Edited on 09/11/2008]
  2. hensue

    hensue New Member

    Maybe since you posted it. We will find out! keep on searching for answers we are with you!
    Sorry i could be no help
  3. Catseye

    Catseye Member

    What symptoms are you having that are making you concerned about your heart?

  4. SpiroSpero

    SpiroSpero New Member

    Well basically my symptoms are: fatigue, allergies against every food (leading to eczema), bad digestion, bad concentration, endotoxins etc. but NO pain. I leave out sugars, gluten, lactose (also fructose), spices, most supplements and so on. I'm down to meat, fish, boiled potatoes and rice.
    My pancreatic output is low but I don't know why. I thought reduced Q could be a cause for it.
    My increased intestinal permeability gets a little better with probiotics and diet but this is not a point where I want to remain at.

    One reason for impedance cardiography is of course that it can be done in the upright position BUT I talked to a medicine student in the practise and he said that an echocardiogram can be done in the upright position too as long as the person who does it is skilled enough.

    I read so many studies about intestinal permeability and nearly all of them find that in persons with heart failure (reduced Q) the intestinal permeability increases and that they advice giving antibiotics because now endotoxins from the gut could get into the blood and can have severe detrimental effects on the health of patients:

    PMID: 15980032 [PubMed - indexed for MEDLINE

    "In recent research, the gut has received very little attention from cardiologists as its role in the pathogenesis of cardiovascular disease is poorly understood. Intestinal ischaemia may play an important role in bacterial translocation by increasing bowel permeability. Decreased cardiac function can reduce bowel perfusion and so clearly impairs the function of the intestinal barrier. There is an increasing evidence to suggest that a 'leaky' bowel wall may lead to translocation of bacteria and/or endotoxin, which may be an important stimulus for inflammatory cytokine activation in CHF. Impaired functioning of the GI system may also contribute to malnutrition and cachexia in CHF. It is hoped that by improving our understanding of the role of the gut in cardiac disease will lead to the development of novel therapeutic strategies in the future."

    "SUMMARY: It remains unclear whether increased adherent bacteria in patients with chronic heart failure are a primary or secondary event and whether they contribute to systemic inflammation. Both lack of mucosal integrity with consecutive local and systemic inflammation and dysfunction of transport proteins may worsen the clinical symptoms of chronic heart failure. Therefore, future studies need to address the pathophysiology of the intestinal barrier whose reactivity seems to be crucial for heart function."

    "Conclusions. Celiac sprue and Crohn's disease show similar prevalence of associated autoimmune disease, higher than the prevalence in ulcerative colitis. The two diseases share the same pathogenic immunologic response and altered intestinal permeability."
  5. Catseye

    Catseye Member

    Check out the post I did on wolverine's thread, I think you are both starved for nutrients. CFS is characterized by nutritional deficiencies due to poor digestion. We don't exactly starve to death because we absorb the sugar from food, but we don't absorb and assimilate nutrients from food for various reasons. I want to tell you the same things I told him so you might as well go look at it since it's pretty long:

    ER 3 Times in one week BP Drops, losing control.. help

    I just bumped it up.

    I used to have horrible heart symptoms myself. I read all the Cheney stuff, too. That's where I got the idea for the mitochondria PEM thread I did in the beginning of this year. Check that one out, too, here it is:

    Mitochondria's role in PEM (crash) and how you can reduce it

    and this one I did is about a stool analysis that will tell you exactly what's amiss in digestion:

    toxic guts, toxic body, why do a comprehensive stool analysis

    I kept thinking I was going to have a heart attack. I kept going to doctors and nothing was wrong. Since I've been working on the guts for 6 months, all my worst heart symptoms are gone. I get some episodes in the middle of the night sometimes, but I just pop a bunch of my midnight supplements and they go away pretty fast. My midnight supps

    b vitamins
    acetyl l carnitine

    The gut is not something regular medicals doctors can normally treat. You have a delicate balance of gut flora to contend with and you need to make sure the body has what it needs to digest food, like zinc and betaine hcl. I went into that in detail in the post to wolverine.

    The fatigue and allergies sound like gut problems. You really need some other veggies besides potatoes and I would give up the brown rice. I thought it was healthy, too, and then I found out some pretty bad things about it. For a healthy person, it's healthy to consume in moderate amounts, but it contributes to indigestion because of leptins? or something like that, can't remember. It's not the safe food I used to think it was.

    And I probably need to go back and tell wolverine this:

    Eat tons of veggies. The best way to do this is to get a bunch of them like broccoli, bell peppers (all colors), onions, garlic, zucchini, squash, cauliflower, celery, etc. but leave out the root vegetables like carrots and potatoes. Cut them all up very small and boil them in chicken broth without msg. Make a huge pot of them and eat off of it several times a day. The trick to veggies tasting good is to have a lot of different ones in every bite you take. Then they taste good! Especially with the chicken broth. Come on, chicken broth could even make a turd delectable if you boiled it long enough. One veggie by itself doesn't taste that good, but with the peppers, onions and garlic, they'll all taste good. The more you get in one mouthful, the better the taste.

    Does that mean you're not consuming dairy, either? It causes digestive problems, immune responses and liver congestion.

    Your pancreas is probably starved for nutrients along with everything else. My heart, when it was starved, felt like every beat was its last, like I was going to drop dead at any second. I went to the ER like that several times, but they kept telling me nothing was wrong. They don't test for things like nutrients or metabolites, however. One of the most important supplements I take is coq10. It's very important for heart health. It's something your body makes itself, and it's also used by the mitochondria to make energy.

    Are you taking any mineral pills? The best ones I found are Krebs Cycle Chelates, they are chelated with amino acids for maximum absorption and they really helped my heart symptoms enormously. They're by Enzymatic Therapy, Teitelbaum's brand.

  6. SpiroSpero

    SpiroSpero New Member

    I love veggies but since I'm part of the 50% of Prof De Meirleir patients with fructose malabsorption this is a huge problem.
    I don't tolerate supplements. Vitamin B6 and Folic Acid in too high doses "kill" me. They cause eczema for weeks. Magnesium can depress me, as does melatonin, antihistamines and especially B12. B12 (hydroxy) causes severe depression in me. I don't know why.
    HHV7 could be a cause but I'm not sure.
    I don't know why I'm allergic to nearly all foods. I think it's because of leaky gut and impaired microcirculation and or virus.

    I'm planning to take some multi mineral and vitamin complex. Malnutrition is a problem here.
  7. mbofov

    mbofov Active Member

    I don't know how or why an impedance cardiography measures differently than an echocardiogram, but it does.

    I've had two impedance cardiography tests, and both showed abnormalities in blood flow, unfortunately.

    I would suggest you e-mail your doctor a copy of Dr. Arnold Peckerman's paper: http://www.cfids-cab.org/MESA/Peckerman.pdf in which he explains all about Q and impedance cardiography.

    The only treatment I'm on is taking hawthorn, CoQ10, and acetyl-l-carnitine, d-ribose and probably a few other things. Also my doctor recently started me on a very low dose of Coreg because the lower number on my blood pressure was too high and he said that indicated vascular resistance.

    I still have all my CFIDS symptoms, however, primarily post-exertional malaise. The d-ribose did help with energy.

    Good luck --

  8. simonedb

    simonedb Member

    I think Cheney is really onto something and unfortunately most cardiologists arent aware about it or care perhaps, its unique to cfs folks. the cfs people with diastolic probs and heart hole cheney found they didnt do well with heart surgery to repair hole whereas some people who deal with the hole or pfo with surgery normies with like migraines do better.

    but hey, my top number of b/p has gone up to like 118, high forme but bottom no. still like 60, since on ldn, is that too wide of spread do ya think? of course mainstream doc thought it was great. used to be 98 over 60 or lower.
  9. SpiroSpero

    SpiroSpero New Member

    I trust Dr Cheney and of course I have a printed version of Peckermans' study for 2 years now :) but I still need to know why he uses impedance cardiograpohy and not an echocardiogram.
    I thought about giving this study to the Prof but I'm frightened that he will stop reading aber the headline. "Chronic Fatigue Syndrome=mental illness" which is ridiculous from our point of view but in some countries and especially in Europe is still a huge problem.
  10. mbofov

    mbofov Active Member

    Why do you think your doc would somehow relate Peckerman's article to mental illness?

    My GP who ordered my impedance cardiography tests told me to take a copy of Dr. Peckerman's article to the cardiologist who actually performed the test, so they would know the protocol to follow. The protocol is outlined Peckerman's article.

    I never saw the cardiologist, however, just his nurse, who performed the test and returned the results to my GP.

    You do pose a good question and I'm sure there's an answer somewhere ....

    Actually, when the nurse performed the IC, the machine I think also performed the equivalent of an EEG or EKG as a byproduct and the nurse said that was normal, while she was performing the test. But then the IC reuslts themselves were skewed.

  11. SpiroSpero

    SpiroSpero New Member

    Well you encourage me to give the study to him. I mean it's a scientific study that was published in a medical journal so there should be no connection to mental illness but I'm not quite sure how I can connect food alelrgies and eczema to it.
  12. mbofov

    mbofov Active Member

    Well, I don't know about food allergies and eczema being related to diastolic cardiopathy. I believe Cheney's work related it to CFIDS, the hallmark of which is post-exertional malaise.

    It seems to me that food allergies and eczema would be related to digestion (and I know digestion is often impaired in people with CFIDS). I've read that eczema can be a symptom of toxins in the body.

    Have you actually been tested for food allergies?

    Before I started taking digestive enzymes and hydrochloric acid (the HCL is very important), I had trouble digesting a lot of food.

    What helped me the most with digestive issues was a chiropractor who was very good at muscle testing. He pinpointed with great accuracy where my digestive problems were stemming from and helped with the aid of products by Standard Process. And, yes, I went to doctors first for all of this, and they could not do a thing for me. They didn't have a clue what was going on.

    The impedance cardiography actually is an inexpensive test. It needs to be done in 2 parts (per Dr. Peckerman) - first lying down, and then standing up. And part of the diagnosis is made from compating the two readings. Each time I've had it done it cost around $65 for each part of the test, but each doctor's office ended up only charging me for one part of the test.

    Maybe if you go the website of the cmopany that makes the machine - it's called a BioZ - here's their website:
    and that may give you more info. The BioZ also measures vascular resistance and I don't know if the EEG or EKG measures that.

    You can actually call that company and they will give you a list of doctors in your area who have the BioZ machine. Their customer service may be able to answer your other questions as well.

    Good luck with all of this --

  13. SpiroSpero

    SpiroSpero New Member

    Awww thanks so much :)
    It feels good to have someone who cares.
    I hope we all get well soon.
    I'll call them.
  14. simonedb

    simonedb Member

    i think that article that manuel cites a ways up the thread explains the gut and heart connection

    where do u live that they have impedance cardio machine? I live in a large university hospital town and when I took my gp the peckerman article she referred me to an echo after she found out that the IC machine they had they got rid of cus they couldnt work it right and then decided it was bogus or something, sigh

    the regular echo stress test i got was no help

    cheney does his own twist using an echo that does get results.
    he also recommends working on the gut and the heart thru diet and supplements etc

    Manuel, I am a lot like you--what u posted to barrow about intolerance to all that stuff i have same problem, can't take co-q10, b12 or 6 etc, taurine no, so many things put me in bad mood or feel worse phys, headahes whatever, its easier to list what i can take then what i can't
    MY solution is I think I am going to go to the Pfeiffer center, I called them and they are sending me their forms to get intake and they told me I don't hve to be evaluated under a psych primary dx, it can be for fms or cfs etc
    They will tell me exactly what supplements I seem to need so take the guess work out of it, well, I guess I should ask them beforehand what they recommend if say a supplement is indicated tht I feel bad on.
    In 2000 I took the spectracell analysis for vitamins and minerals and it told me I only needed cal/mag and zinc, I don't know how accurate it was but I didnt feel bad taking those supplements.
  15. mbofov

    mbofov Active Member

    I live in Lancaster, California, which is not noted for anything (but has beautiful desert scenery).

    I used to live in a very small town of around 25,000 people and there was a cardiologist there who had the BioZ.

    Call the company - go to the website link in my earlier post - they are very nice and will give you a list of doctors in your area who have the BioZ.

    I was stunned to find a cardiologist in my former tiny little town who had the machine, so I'm sure there will be one where you live.

  16. SpiroSpero

    SpiroSpero New Member

    Good to know that I'm not alone. The intolerances to almost everything is just crazy. There are so many studies and so many people who advice taking this or that and I'm convinced that it is right to take this or that supplement because you are low on it or the use has scientific background but it just doesn't work for me.
    B12, B6, Folic Acid even in low doses destroy me.
    Only if I'm really low on sth. I feel better when I take it but nearly all of the time it gets worse when I take sth. continously.
    I even have reactions to magnesium, zinc and vitamin c. But there are also times where I tolerate them very good.

    I really need to find a solution to this. In my eyes the causes can be reduced to two possibilities:

    1. Increased intestinal permeability: It doesn't matter what you eat, peptides will leak into the blood stream and you will get reactions.

    2. Virological cause: HHV-6 Drug Induced Hypersensitivity Syndrome.

    Have a nice Sunday.

  17. Andrew111

    Andrew111 Member

    According to Cheney, he has done echocardiograms sitting and standing and they do show a problem. He also said that cardiologists don't do this kind of testing, and so they never see the problem. Also, I wonder if there is even published research on how to do this with CFS patients and what to look for.

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