posted
The recent death of Leslie Wermers of heart failure from Lyme really struck a chord with me. I am so sad for her family and friends and I hope they are getting a lot of support and comfort right now.
Because my symptoms have been tremendously cardiac -- I have bartonella in my heart, or at least my LLMD and I think I do -- and I have had cardiac symptoms I have never heard about or read about in anyone else. Rifampin and houttuynia seem to be keeping my cardiac symptoms *somewhat* in check, but any exertion pushes my heart symptoms right back to the surface.
A little over a year ago, though, death felt like a constant companion, and there wasn't a minute in any day that I didn't feel like I was going to die from this heart infection.
Now that I've begun treating babesia, I have found that it is causing some additional heart symptoms, since those have been helped by Mepron. They are not nearly as severe as the bartonella symptoms, but they are scary at times. I do not know if Lyme is also affecting my heart.
My heart situation still feels very tenuous, and I would like to know more about those who have died from heart-related complications of Lyme and coinfections. I know a lot of this is personal, but most deaths from this illness seem to be reduced to a few words, a paragraph, and not a lot of detail. It is hard to find real descriptions of the heart problems in the medical literature.
A book I have on syphilis describes syphilis heart problems as causing a "violent cardiac death" in some patients, so I have no doubt there are versions of Lyme that can do the same.
But what do we know about those who have died of Lyme-related heart complications? Did they have just Lyme or Lyme and coinfections? Which coinfections? Were they being treated with IVs that show a good prognosis with cardiac complications or just orals or both? What were their heart symptoms? How do we know the lethality potential of our cardiac symptoms?
Posts: 929 | From Massachusetts | Registered: Oct 2007
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It is so sad what this disease can and does do to many, including losing their lives! I have a HUGE feeling that many that die from this are due to heart problems.
I have no idea which TBI is the colprit as there are so many speculations, so many different strains of Lyme, Babesia, etc.... Many think it is Babesia, but who really knows.
I have had Lyme, Babesia WA-1 and RMSF (this I think is gone?) for almost 18yrs. and I have a Left Bundle Branch Block with delayed QTV ? waves. I have severe arrythmias with my H.R. ranging from 60 to 140+. From what I understand this is fairly common, especially when you've been infected for a long time.
Either one of these conditions can cause 'sudden death'. Although right now my LLMD has me on a lot of supplements in high doses for the heart, he will not start the IV treatment I need until I get stronger.
In my opinion anyone with chest pain, PVC's, palpations, etc.... should see a Cardiologist. Much of the time these symptoms or conditions are benign, but they can also be a warning sign that warrents further investigation!!!!
The problem is that Cardio. know very little or nothing about Lyme so they don't always take your sx seriously enough to do the proper testing. Then as good as some LLMD's are, the heart is NOT there specialty so NEVER assume that they are doing what's needed.
I think it's a HUGE GAP in the medical field and one that slips through the crack way too often!!!!
I need to follow my own advice, but we definitly need to be more por-active in our care. Always getting copies of every Dr.'s notes and test results, and insisting on seeing the correct specialist and proper testing.
You are SO right that when someone passes, it usually states complications from Lyme at most. I just told my husband 2 days ago that when I pass, I want a full autopsy and in my obituary I want a detailed descriction as to the cause of my death along with Lyme & C0.
I know that sounds morbid, but I think it is sooooo important that people know exactly what the cause of death is.
Like the other poster asked, if you don't mind---what are your symptoms??
Posts: 351 | From Georgia | Registered: Feb 2008
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posted
I have had CFIDS for almost 17 years, and began having pretty severe chest pains, tachycardia, and orthostatic intolerance pretty early on. I had some abnormal heart tests that showed evidence of cardiomyopathy, such as a Holter test with inverted T-waves and T-wave flattening. I would have severe chest pains upon exertion, had almost zero exercise/exertion tolerance, and was mostly bedridden for years and years.
Then I moved to a house in the woods, at the beginning of August four years ago, with field mice and chipmunks running around wild. About six weeks after moving to this house, I had an episode that felt like a heart attack -- sudden, horrific seizing in my chest and my hands froze into claw shapes and I could not pry my fingers apart or talk. I did not know what happened -- a stroke? A heart attack?
All I know is that from that moment on, my life changed dramatically. I began to have a TREMENDOUS crushing/squeezing sensation around my visceral heart 24/7. It felt like a trash compactor: something made of iron just squeezing around my actual heart so that it could barely beat, so my neck veins bulged out and I could not get any oxygen anywhere in my body. I felt all the time like I was being suffocated by hypoxia. My cardiac output was tested soon after that and it was dangerously low.
All day, all night except when I slept, it was on the magnitude of a continuous heart attack -- just screamingly intense. I could not, for three years, even risk sitting up even slightly or the crushing would magnify for hours. It felt every minute like I was about to die -- nothing like angina or something that happens occasionally. It was constant, 24/7, and I was far too ill to get to a doctor and nobody would help me. I knew I was dying but I did not know what was wrong. I begged my home visit doctor to get me an echocardiogram at home but he was just useless and oblivious.
The crushing sensation was beyond CRUSHING, like a car on top of my heart, just unimaginably bad. I had to lie flat all the time with my legs elevated way above my head, generally up on the wall, all day. I had to eat lying down. Even lifting my head would make the crushing much worse, often for hours. I have never read a description of anything like it, though I looked for one. I did read in a book about syphilis that syphilis can cause a "violent cardiac death," and that's how I would describe it -- a violent cardiac death.
I'm certain the only reason I did not die is that, after being bit by a tick three years into this -- after emailing cardiologists all over the country and begging and pleading everyone for help and finally just making out my will and preparing to die -- I got a round of Cipro. Within a few weeks on Cipro, the crushing got a lot better. Cipro absolutely saved my life.
I had to stop Cipro because of tendon problems and later switched to Rifampin. A year into treatment, I no longer feel every single minute like I'm going to die, but the heart stuff comes back with exertion so I have to be extremely careful. I still have to be lying down almost all of the time, but I can sit up to eat meals and sometimes to do other things, and things are a lot better.
I also have a right bundle branch block too. I have had other abnormalities on EKGs including Long QT and T-wave changes.
I finally got a positive bartonella test, and because of my treatment response my doctor and i believe bartonella had infected my heart and was essentially killing me. I don't know why I'm alive. In the immune-compromised, bartonella in the heart is almost always fatal without treatment and I could not get treatment for three years of unrelenting agony.
After I had treated for bart for a long time, I began to have this thump thump thumping in my heart. I realized it got worse when I cut back on artemesia so I told my LLMD I thought it was babesia. It has improved on Mepron but I haven't been on Mepron that long.
Some of the less typical strains of bart seem to cause very dramatic cardiac symptoms in dogs (and are also known to affect humans). For example, an article I read on bartonella vinsonii in dogs showed cardiac symptoms much like mine -- very dramatic, very intense, lethal without treatment.
So I had apparently become infected with bart a little over four years ago, and then later in the summer of 2007 I was bit by a tick and suddenly had shaking chills (now I know this was babesia) and sudden onset symptoms of Lyme that turned to neuro Lyme. I still don't know if my many years of CFIDS have anything to do with Lyme and coinfections or if this is a new and unrelated thing. My CFIDS symptoms have not improved on antibiotics but my Lyme, bart, and babs symptoms have improved.
I like the idea about the detailed autopsy -- even though it is morbid. I think it's so important to have detailed information since most of us can only get vague information at best about how the cardiac (and other) deaths happen.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
Astria, thanks for alerting me to my mailbox being full -- I emptied out some messages!!
I read a lot about Q Fever as it is known to cause CHRONIC endocarditis and also a syndrome that is just like CFIDS. It can be spread very easily sometimes like through barn dust. I had a test for it that was negative but I don't know if the tests are all that accurate.
Interestingly, Q Fever Endocarditis is one of the few conditions where antibiotic treatment is recommended for *years.* If someone takes it that seriously, you know it's gotta be bad. That is scary about your valve -- could you share what your symptoms were before you had it replaced?
My LLMD is supportive of me with all of this, so I finally did find one doctor who would listen. Cardiologists in general seem completely oblivious to the effects of Lyme & COs on the heart.
If you learn anything about the testing for Q Fever -- like how to know if the tests are accurate -- I would love to know more about that.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
Does anybody know of any Lyme literate cardiologists? Does any one know of any studies on chronic effects of Lyme on the heart? I am a doctor, but all I have been able to find is info on Lyme carditis, which has classically been taught to occur earlier on. Thanks.
Posts: 8 | From New York | Registered: Jun 2008
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posted
I do not know of any Lyme literate cardiologists but would certainly like to find one too.
I am fairly sure Dr. Martin Lerner, a cardiologist in Michigan who treats chronic fatigue syndrome patients, has found numerous pathogens in his patients' hearts -- mostly herpesviruses such as HHV-6 and EBV and CMV, but I think he also finds coinfection with Lyme. He considers these patients to have cardiomyopathy.
There is a lot of literature on bartonella in the heart (particularly endocarditis). Babesia is known to cause heart failure. Probably many of the Lyme patients who have heart problems have coinfections, as I do. Q Fever causes chronic endocarditis. Tularemia can infect the heart.
I have not been able to find much on chronic Lyme and the heart, but I think looking at the natural history of syphilis might shed some light on what *could* happen with Lyme once it gets in the heart. Syphilis rarely gets to that point any more as it's treated before causing heart problems, but in the past it was known to cause very serious cardiac problems and this happened in its chronic state. My guess is that Lyme in the heart follows a similar course if untreated.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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I just read your post about some of your history. Firstly I could be very wrong, but my guess is that you've probibly had Lyme & Co. a lot longer. CFIDS sx's are so close to Lyme that it's hard to know for sure???!!
I didn't see that you had mentioned a stress test; did you ever have one done? If may be imposible to do on a Treadmill, but the can do a chemically induced one. If you haven't, I strongly reccomend that you ask for one!!
Also a Doppler Ultrasound on your Coratid Arteries, an Echo done on your heart and maybe even an Angiograhm would be reasonable at this point. Well, actuall a long time ago!
I also noticed that you didn't mention any heart medication; are you taking any????????
Although the Cipro may have slowed down the affects due to an infection, it is not enough to take care of all that you mentioned!
Please let me know, okay!!!!
Posts: 351 | From Georgia | Registered: Feb 2008
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My cardio has seen alot of Dr. J's patients who have had heart damage due to Lyme.
I was initially diagnosed with culture negative endocarditis. They said they never could culture anything.
When they did the open heart they pulled out a string of infection-
Maybe they were only trying to culture certain things.
My cardio I think is really coming around-Maybe one day he will be Lyme literate.
Posts: 303 | From Jekyll Island, GA | Registered: Sep 2008
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posted
Bartonella is often a cause of culture-negative endocarditis but they usually only consider it in people who are homeless or people with AIDS (the two groups most likely to present with it). It could also be Q Fever or one of the other rare coinfections that cause endocarditis.
That's very interesting about your LLMD having numerous patients with heart problems. Did he share any details? Did they have endocarditis as you did? Did you have a squeezing/crushing sensation with the endocarditis?
Posts: 929 | From Massachusetts | Registered: Oct 2007
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A search on pubmed for lyme +heart produces 20 pages of abstracts listed. Pubmed sometimes gives results that don't seem to match the search term, but even with those winnowed out, there are still many reports of lyme effects on heart. I am posting one below. Plus, babesia and bartonella can have heart symptoms. Don't know about ehrlichia or other possible tickborne diseases/coinfections. For names of lyme literate cardiologists, you could contact ILADS and ask: www.ilads.org
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Congenit Heart Dis. 2007 Sep;2(5):338-41.Links Complete heart block due to Lyme carditis in two pediatric patients and a review of the literature. Silver E, Pass RH, Kaufman S, Hordof AJ, Liberman L.
New York Presbyterian Hospital, Columbia University, Division of Pediatric Cardiology, Arrhythmia Service, New York, NY, USA.
Carditis is a common manifestation of adult patients with Lyme disease affecting 4-10% of Lyme patients in the United States. However, children with Lyme disease rarely present with acute carditis. The management of pediatric patients with complete heart block (CHB) secondary to Lyme carditis has not been well described. We report the acute management of 2 pediatric patients that presented in CHB secondary to Lyme disease.
PMID: 18377450 [PubMed - indexed for MEDLINE
Posts: 8430 | From Not available | Registered: Oct 2000
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