Does anyone seem to know the answer to this question:
Out of all the people who have died from lyme disease, what percentage of them have died in their sleep from heart failure?
Or does anyone know the percentage of people who have died from heart failure that had Lyme Disease?
I am asking for personal reasons. If anyone has any information on this I would really be interested and greatly appreciative.
Posted by bettyg (Member # 6147) on :
maria, i'm unaware of this info is available.
if you go to melanie reber's site, www.lymememorial.org you might be able to find things there on statistics.
otherwise, i'd contact the ILADS.org site and ask them; our lyme literate drs. org.
Posted by MariaP (Member # 18692) on :
Thanks Betty I didn't even think to look at Mel's wedsite.
Posted by astriapage (Member # 17120) on :
Hi there-
If it helps any, I about died of conjestive heart failure-they caught it in time and did open heart surgery the next day!
This was because my mitral valve was completely shot-they replaced it.
Hope this helps-if you are concerned for yourself or someone else get a good cadiologist and ask for an echo-that is what saved me.
I was very persistent and told them that I knew something was very wrong-he obliged and I was right!
Good Luck!
Posted by Fordace (Member # 14874) on :
quote:Originally posted by astriapage: Hi there-
If it helps any, I about died of conjestive heart failure-they caught it in time and did open heart surgery the next day!
This was because my mitral valve was completely shot-they replaced it.
Hope this helps-if you are concerned for yourself or someone else get a good cadiologist and ask for an echo-that is what saved me.
I was very persistent and told them that I knew something was very wrong-he obliged and I was right!
Good Luck!
did you have any dull chest pain all the time? Were you short of breath always?
Posted by LymeCFIDSMCS (Member # 13573) on :
I have dull chest pain and am short of breath right now. If you have those symptoms and can get to a hospital (which I can't) they are definitely serious symptoms.
It's not something to put off -- they are also heart attack symptoms.
There is another thread now about the CFIDS doctor, Dr. C., and his DVD on cardiac issues. I don't think anyone posted a summary and the DVD set is long but well worth watching.
One thing Dr. C. (not sure if I can say his name since he's not a Lyme doc?) found is that CFIDS patients have diastolic heart failure, rather than systolic.
CFIDS patients with heart failure also don't tend to have edema, and with diastolic heart failure the ejection fraction is often normal ("preserved") so it's much harder to diagnose.
Other heart problems can cause shortness of breath and dull chest pain, like pericarditis I believe.
Posted by Capa (Member # 18930) on :
I also have chest pain/tightness, dilating veins, and bradycardia. They sent me to the ER for it who in turn sent me home stating I need a full cardiac workup.
The soonest I can get in is in 6 weeks from now! The health care system is crazy.
Posted by LittleLymie19 (Member # 15610) on :
I have shortness of breath, intermittent chest pain, intermittent jaw pain, left arm pain, bradycardia upon laying down, tachycardia upon standing, and heart palpitations.
I've had a normal EKG, echocardiogram and holter monitor test. Do these heart problems show up on these tests? What does Dr. C have to say about this?
Could someone please paraphrase the information that Dr. C shares for patients who can't follow his video due to neuro or cognitive symptoms? Thank you!
Posted by LymeCFIDSMCS (Member # 13573) on :
At some point I saw a great summary of Dr. C's video on the web somewhere, but I have no idea if it's still posted -- you could try finding it by Google maybe.
Dr. C. does novel forms of testing -- like he'll do an echocardiogram where the patient is upright for a period of time and then it does show abnormalities.
He also relies on research by Arnold Peckerman that used a machine called the Impedance Cardiograph. I had the test and mine was grossly abnormal upon standing, which is what Peckerman found for CFIDS patients.
Posted by bettyg (Member # 6147) on :
cms, as long as they are NOT a treating llmd dr. or are NOT ALTERNATIVES DRS. ... complete name can be given.
Posted by astriapage (Member # 17120) on :
It seems that I had alot of people listen to my heart because of my tachcardia-and it was never caught. I had alot of symptoms, dizziness, breathlessness, chest pain, but I also had alot of other symptoms elsewhere in my body too, which I guess threw them off.
I got very sick last year, had a fever of 105, vomitting for days, and my mom took me to my old peditrician, she was desperate, he listed to my heart and knew something was really wrong!
He rushed me to the hospital and a cardiologist stepped in and did an echo, and he knew what was wrong-there was something that had damaged my mitral valve. They put me on 6 weeks of IV abx, which did not work.
I had to have heart surgery-The infection was tested when they did my open heart surgery, and they never could identify it.
After the surgery, I started piecing this puzzle together, and pushed my cardio to do a Lyme test, and it showed that I do have Lyme.
I believe the Lyme damaged my heart, and from what I hear, like in this post, it is very common.
I feel for you guys out there who know something is wrong, but nothing show up. I have been there! Just pray that a doctor shows up in your life who will REALLY listen to your heart through a stethescope.
This is all it took with me! He listened and I was rushed to the hospital!
I am still very sick though-it never seems to end, and alot of days it feels like my heart is still the same, and I am petrified of what could happen.
If if happened in the past, I am fully aware it could happen again.
Posted by sutherngrl (Member # 16270) on :
My MVP has gotten worse. I had it before I became ill with LD, but after getting LD I started having heart issues and had an echo done and it had gotten somewhat worse, but not bad enough to consider surgery.
The other day my regular doctor put his stethescope on my heart and heard it immediately, which worries me bacause sometimes they have to listen for a while to catch it.
What are we suppose to do? We can't just run to the ER every single time our heart aches or palpitates. I would be there every day. All we can do is just get an echo every year or two and hope nothing happens in between.
Posted by LittleLymie19 (Member # 15610) on :
Sutherngrl, I feel your pain, almost literally
So if nothing shows up on the echo, it still doesn't mean that nothing is there? I always thought that since they didn't find anything in the echo, then I was safe and whatever it was wasn't going to kill me. Perhaps I should try to get through Dr. C's long video so I can understand what kind of tests I should push for...
Posted by sutherngrl (Member # 16270) on :
The echo is probably the best way to see it and not be invasive.
Posted by Lymetoo (Member # 743) on :
LittleLymie... You could have MVP that shows up on the echo, but it may be within "normal" limits.
So nothing would be done and not much said. Get a copy of your echo report if you can.
Posted by LymeCFIDSMCS (Member # 13573) on :
Dr. Cheney (I guess I can use his name now) does not say an echo is worthless in general -- he's talking particularly about what happens in CFS/CFIDS patients, so it may or may not apply to Lyme.
What Cheney did find was that CFIDS patients had normal echos until they were done in an upright position, and then they were grossly abnormal (i.e. I think a part of the heart collapsed).
He also did tests for PFOs and found that most CFIDS patients have them.
Dr. Lerner did 24-hour Holter testing on CFIDS patients and found evidence of cardiomyopathy in most, which he later proved with heart biopsies.
He now sees two subgroups with these abnormal Holters: those with herpesviruses in their hearts, and those with herpesviruses plus a coinfection including Lyme or babesia.
But most cardiologists would interpret those tests as normal.
Another issue is that more than 50 percent of heart failure (I just read this last night) is now diastolic, which means the ejection fraction on an echo will be normal.
Dr. Cheney found that in CFIDS patients there was not typically edema and the more common symptoms of heart failure, but that they do have diastolic heart failure, many of them.
Posted by Keebler (Member # 12673) on :
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Maria,
With apologies for not having a simple answer for you, some of this below may help shed some light.
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As LymeCFIDSMCS outlined above -
Here are 3-hour free on-line video and text links to the work of Cheney, Lerner and Peckerman. This is not about lyme, per se, but I can see how it relates and there is much helpful information:
Topic: To everyone with cardiac symptoms please read!
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Chronic Chlamydia Pneumonia (Cpn) has also been linked to heart disease. Cpn is also an infection that many lyme patients seem to carry.
And, of course, testing is best at a specialty lab and many doctors do not recognize the chronic state. The treatment protocol is similar to that of lyme but with some important differences.
Death by Deception: Unmasking Heart Failure - by Dick Quinn, Shannon Quinn, Colin Quinn, Al Watson
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[ 03-18-2009, 03:17 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
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This book focuses on lyme patients and also those with Cpn (Chlamydia Pneumonia) - and the effects of high cortisol from the stress of infection can cause severe heart damage.
Suggestions included in the book are very helpful:
The Potbelly Syndrome: How Common Germs Cause Obesity, Diabetes, And Heart Disease (Paperback) - 2005
by Russell Farris and Per Marin, MD, PhD
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Posted by LittleLymie19 (Member # 15610) on :
LymeCFIDSMCS, thank you. That was the best summary of his talk that I've come across. I think I have an idea of what he is talking about now. Does he suggest any doctors or medical facilities that would perform the testing that he does?
Posted by LymeCFIDSMCS (Member # 13573) on :
LittleLymie, I think the best way to get the testing he suggests is to bring in some of the research he cites, i.e. by Peckerman and Lerner. Most of it is available here:
If you can find a place that has the impedance cardiograph test, it might show abnormalities if you test both lying down and after standing up for ten minutes.
Unfortunately, in my experience, most cardiologists are not all that interested in this stuff!
I am curious what the adrenal/heart book recommends for treatments. That link I just posted also has the streaming video of Dr. Cheney talking about diastolic heart failure. It's dense but worth it even if you can only watch a few minutes.
Posted by Melanie Reber (Member # 3707) on :
Good morning Miss Maria,
Unfortunately, there is not a clear answer to your question...because the stats are just not available. Too many pass away without autopsies, so we may never know the complete picture.
What we DO know is that there are many TBDs that can cause heart issues. So, when anyone complains of chest pain, it should be taken very seriously, and NOT automatically assumed that it is only a temp symptom that will resolve on its own.
If I can provide more specific info for you, please ask. M
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