Hoping you guys can lend me your expertise. In short, I went to my doc on Monday because I've been very short of breath for 2 weeks (came on suddenly) - to the point that it is debillitating. He did an EKG which showed bradycardia (low heart rate). Set me up to see a cardiologist, who confirmed a heart block. His assessment is that I need a pacemaker and surgery is scheduled for Thursday. To say this week has taken a surreal turn is an understatement. The cardiologist's first thought was Lyme disease because I'm otherwise healthy and show no reason for suddenly developing this "wiring problem" in my heart. This is the first day I've done any reading on Lyme disease and it's all clicking into place. I had the flu a month ago --- very high fever for several days, extremely achey and joint-sore. Trouble sleeping. My hip, knee and elbow hurt. I'm a newspaper photographer and am always tromping through the woods and marshes here in Maine. So the chance of getting a tick bite is reasonable, especially given our mild winter.
The cardiologist is running blood tests and did an echocardiogram, with results pending.
Is Lyme disease 'jumping out' at you guys as a distinct possibility? Have any of you faced the possibility of a pacemaker to get your heart beating in a proper rhythm again? How definitive are these tests? (I know he's running one for rheumatoid arthritis as well...). Does this feel like I'm rushing headlong into a surgery that I should be holding off on?
Lots of questions about all this. I don't want to wind up with a pacemaker that doesn't address the underlying cause. But on the other hand, I am basically confined to not being able to work or function because I'm now at high risk for passing out from this bradycardia.
Any help, advice, cautionary tales would be MOST APPRECIATED!!!
Thanks in advance!
-------------------- Ruth Posts: 9 | From Maine | Registered: Apr 2006
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I think you're very wise to at least consider Lyme before jumping headlong onto the surgery cart!
Why not have a visit with an LLMD first?
He/she can run an IgeneX western blot on you.
From symptoms and location, sure sounds like a possibility.
Even if that's NOT the problem, at least you'd have the satisfaction of eliminating it as a differential diagnosis.
This is definitely NOT being done with the standard doctor's tests -- their western blots/ELISA tests are essentially worthless. You want the BEST one there is, plus an evaluation by a Lyme specialist.
Not to mention that a Lyme diagnosis, while not a day in the park, gets you treating the CAUSE, not the symptom, as you wisely point out!
Good luck. If you post in "Seeking a doc" and your city and state, someone will fix you up with a doctor recommendation. Meanwhile, please take it very easy!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
quote:Originally posted by Michelle M: I think you're very wise to at least consider Lyme before jumping headlong onto the surgery cart!
Why not have a visit with an LLMD first?
He/she can run an IgeneX western blot on you.
From symptoms and location, sure sounds like a possibility.
Even if that's NOT the problem, at least you'd have the satisfaction of eliminating it as a differential diagnosis.
This is definitely NOT being done with the standard doctor's tests -- their western blots/ELISA tests are essentially worthless. You want the BEST one there is, plus an evaluation by a Lyme specialist.
Not to mention that a Lyme diagnosis, while not a day in the park, gets you treating the CAUSE, not the symptom, as you wisely point out!
Good luck. If you post in "Seeking a doc" and your city and state, someone will fix you up with a doctor recommendation. Meanwhile, please take it very easy!
Michelle
-------------------- Ruth Posts: 9 | From Maine | Registered: Apr 2006
| IP: Logged |
bettyg
Unregistered
posted
WELCOME to the board. Breaking this up so we can read it in paragraphs.
quote:Originally posted by rar1234: Hi everyone ... Hoping you guys can lend me your expertise.
In short, I went to my doc on Monday because I've been very short of breath for 2 weeks (came on suddenly) - to the point that it is debillitating.
He did an EKG which showed bradycardia (low heart rate). Set me up to see a cardiologist, who confirmed a heart block. His assessment is that I need a pacemaker and surgery is scheduled for Thursday.
To say this week has taken a surreal turn is an understatement. The also the test without a box because I'm otherwise healthy and show noalso the test without a box reason for suddenly developing this "wiring problem" in my heart.
This is the first day I've done any reading on Lyme disease and it's all clicking into place.
I had the flu a month ago: very high fever for several days, extremely achey and joint-sore. Trouble sleeping. My hip, knee and elbow hurt.
I'm a newspaper photographer and am always tromping through the woods and marshes here in Maine. So the chance of getting a tick bite is reasonable, especially given our mild winter.
The cardiologist is running blood tests and did an echocardiogram, with results pending.
Is Lyme disease 'jumping out' at you guys as a distinct possibility?
Have any of you faced the possibility of a pacemaker to get your heart beating in a proper rhythm again ?
How definitive are these tests? (I know he's running one for rheumatoid arthritis as well...)
Does this feel like I'm rushing headlong into a surgery that I should be holding off on?
Lots of questions about all this. I don't want to wind up with a pacemaker that doesn't address the underlying cause.
But on the other hand, I am basically confined to not being able to work or function because I'm now at high risk for passing out from this bradycardia.
Any help, advice, cautionary tales would be MOST APPRECIATED!!! Thanks in advance!
I can not address your heart problem, but want to copy/paste some newbie links here for you to go to especially TREEPATROL'S NEWBIE LINKS. Might be something there on this...don't know; hundreds of links shown!
I agree, find a GOOD LLMD soon using the seeking dr. section! You could also go to the SUPPORT GROUP area, left hand side to your state. Email or call the support group leader in your area.
We wish you the best on finding answers soon and saving yourself a surgery if possible!
Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Burrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol''s newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl''s extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn''t cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
mention you have lyme and marshall protocol, they will give you 20% off!
Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that''s why I currently have LONG addresses vs. short tiny ones! I''ll keep trying.
As you can see, I'm new to this site - I just posted nothing in the previous post!
Thanks so much for your advice. I didn't realize that there was such a distinction in the quality of tests - that info is a real eye-opener and, as you suggest, I'll look for a local specialist and put the brakes on this pacemaker until I'm certain I've gotten the best possible advice.
I can see that I've got to get up to speed on Lyme disease very quickly (like the lingo - LLMD?). In just an hour of reading on this site, I see that I've been having a number of other symptoms I'd never have imagined were related to Lyme.
Thank you for your advice on taking it easy. It's scary to think of how I've kept up my normal schedule during this couple of weeks of (undiagnosed) bradycardia. Lugging heavy gear, pushing myself way beyond my limits. Thanking my lucky stars I didn't have an accident!! I'll will definitely heed your advice.
Thanks again for your help. Ruth
-------------------- Ruth Posts: 9 | From Maine | Registered: Apr 2006
| IP: Logged |
Thanks for all the links and info. Wow, I've got some homework in store for me in these next few days getting up to speed on Lyme disease. Typical of me to be impatient - I found this site, posted a question and THEN started reading. I have to say, it's daunting. I need to take a firm hand in directing how I am being diagnosed/treated and there's a sense of urgency because of the impending surgery. But it's clear that I've come to the right place to help me do that. This site a godsend. Thanks again. Ruth
-------------------- Ruth Posts: 9 | From Maine | Registered: Apr 2006
| IP: Logged |
posted
Welcome to the frustrating world of Lyme Disease. Most of us knew absolutely nothing about it until we were faced with it. Our daughter was diagnosed with it, treated, and declaired cured. A couple of years later we moved closer to our children. My husband went with me to the dentist and brought home a magazine. He asked me to read an article saying, "This man sounds exactly like me." I read it. It was about a man who had chronic Lyme Disease. I said, "it does sound like you." I then started doing an internet search about Lyme. The more I read, the more convinced I was that he had it. I printed out Dr Burrascano's treatment guidelines and took them to our doctor. I spent hours and hours on line learning more about the disease. This forum was a life saver for me. He was very sick and had severe neurological impairment. He is doing very well now with no residual neurological problems. However, he is still on antibiotics. It has been a very long road, almost 7 years. Good luck! Ann
-------------------- Ann Posts: 66 | From Bourbonnais, IL, USA | Registered: Jan 2004
| IP: Logged |
bettyg
Unregistered
posted
Ruth, yes, it is overwhelming, but at least you are on the right board with 24/7 support/educational help.
I hope you may have found something in TREEPATROL'S newbie links on YOUR subject.
I will say this much too about surgeries; I've had 12 of them; 11 during time I had UNDX chronic lyme. Most of these I got really bad, staff infections, and Murphy's law hit over & over.
I feel it was the spirochetes raising heck in me during this time, and recovery time took FOREVER for me.
Will you be needing any blood for this? If yes, donate YOURS FOR YOU! I feel I had re-infections thru some of the blood transfers I received over the years too. Again, best wishes to you. Bettyg
IP: Logged |
posted
Pacemakers are not necessarily permanent for heart block. Even with confirmed LD, you still might need a pacemaker until the infection is resolved.
Heart block is not entirely benign and a pacemaker is a good idea if recommended until the underlying cause is addressed.
Why would anyone not want to address symptoms for the short term until the long-term situation is improved??? Its like not taking painkillers for joint/muscle pain but just taking antibiotics. Doesn't make sense, particularly with a serious symptom.
What degree heart block do you have?
I have heart symptoms from LD and do take heart medication for them while at the same time taking antibiotics for the underlying infection.
Posts: 689 | From western MA (we say buttER and pizzA) | Registered: Nov 2004
| IP: Logged |
posted
There has been a lot of very good adice given to you here on the board. It sounds like you might have been infected fairly recently with what you described as the flue like illness that came on. Get a good LLMD, WB tests and co-infection tests. Babs really likes to hang out in the heart also.
There are a number of suppliments that can really help protect the heart. CoQ 10 is one of them. My LLMD did some metametrixs testing one me and we found that my CoQ10, E, A, carotine were dangeriously low. I needed to take 600mg for 3 months to get my levels up. thats over 10X what a healthy person needs.
I had boughts of artial fib but treatments for the infections has corrected this. I had to go the IV rocephine route to get this under control.
Treat the cause but do what needed to keep your heart working. Heart block can be reversed in most cases.
Posts: 582 | From milwaukee wi | Registered: May 2005
| IP: Logged |
A hearty (no pun intended) thank you to everyone for your advice and knowledge. I think it's becoming obvious the pacemaker is a necessity - and as was mentioned, it needn't be permanent. I don't know the 'degree' of the block ? I was just told to take it very easy until the surgery - no lifting, no exertion. ?? Lord knows I don't feel like lifting or exerting myself!
Thanks to this site, I was able to find the one doctor in our state that does the 'gold standard' test for this - and it is now scheduled. My doc's in complete agreement about not simply relying on the results I get from the cardiologist's office. That's reassuring.
I was armed and ready with information for my doctor this morning that helped us put all the puzzle pieces together from this last several months (nightsweats, flu, back/hip pain, bradycardia) and that is because of all of your feedback - and the info on this site.
In two short days since finding this site, it's all ready enhanced the quality of my care. What a blessing!
Thanks again ... Ruth
-------------------- Ruth Posts: 9 | From Maine | Registered: Apr 2006
| IP: Logged |
posted
I take no position on whether you need a pacemaker!
However, here is an article from a medical journal. If you like to research this, you could do a search on pubmed for the terms heart block +lyme. It will bring up quite a few journal articles. One of these, which has no abstract, says a pacemaker was installed before testing for lyme, which the patient had requested. So, they felt the pacemaker had been installed incorrectly.
As someone else said, possibly you need this. Possibly you don't. Someone better qualified than us would have to decide this.
-----------------------------------------
J Invasive Cardiol. 2003 Jun;15(6):367-9.
Complete heart block due to lyme carditis.
Lo R, Menzies DJ, Archer H, Cohen TJ.
Section of Electrophysiology in the Division of Cardiology, Department of Medicine, Winthrop-University Hospital, Mineola, NY 11501, USA.
Lyme carditis is becoming a more frequent complication of Lyme disease, primarily due to the increasing incidence of this disease in the United States. Cardiovascular manifestations of Lyme disease often occur within 21 days of exposure and include fluctuating degrees of atrioventricular (AV) block, acute myopericarditis or mild left ventricular dysfunction and rarely cardiomegaly or fatal pericarditis.
AV block can vary from first-, second-, third-degree heart block, to junctional rhythm and asystolic pauses. Patients with suspected or known Lyme disease presenting with cardiac symptoms, or patients in an endemic area presenting with cardiac symptoms with no other cardiac risk factors should have a screening electrocardiogram along with Lyme titers.
We present a case of third-degree AV block due to Lyme carditis, illustrating one of the cardiac complications of Lyme disease. This disease is usually self-limiting when treated appropriately with antibiotics, and does not require permanent cardiac pacing.
Publication Types:
* Case Reports
PMID: 12777681 [PubMed - indexed for MEDLINE]
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
How old are you? I'm only asking to determine if you are at an age (elderly)where heart blocks are more likely to occur from primary conduction problems.
I would get the pacemaker if it were me. You could have a cardiac arrest if it is or worsens to a complete heart block. I've seen lots of people with second degree heart blocks who are asymptomatic.
Posts: 340 | From Ohio | Registered: Oct 2005
| IP: Logged |
posted
Here is the other article I mentioned. Found it full text:
From: THE LANCET . Vol 360 . September 7, 2002
Uses of error
Who is to blame?
Freek W A Verheugt
I have been a cardiologist for more than 20 years and find that the practice of cardiology may have become routine. The massive burden of ischaemic heart disease sometimes obscures the clinical and epidemiological traps that lay in our paths once in a while.
The 47-year-old consultant of our neonatology department experienced vague chest sensations accompanied by cough. Palpating his pulse he noticed extrasystoles. During a transatlantic flight 1 month later, after a short moment of discomfort in the right shoulder he experienced some lightheadedness and blurred vision when he went to the lavatory. He returned immediately to his seat where he collapsed and had a seizure, which was were noticed by a fellow passenger. Shortly thereafter, all the symptoms ceased and he fully recovered.
He left the plane independently and was admitted to our department. His ECG was normal, except for first-degree atrioventricular block. He was observed on our cardiology ward, where no significant bradyarrhythmias were seen. A 24 h Holter recording did not show any abnormalities, except for persistent first-degree atrioventricular block. Left heart catheterisation and coronary angiography were normal. Invasive electrophysiology testing revealed a prolonged sinus node recovery time, an atrioventricular node refractory period of over 400 msec (normal less than 300 msec) and the occurrence of Wenckebach block at a paced heart rate of 110 beats per minute. A DDD pacemaker was inserted and the patient did not experience recurrent syncope.
The patient consulted the medical literature on the causes of atrioventricular conduction disturbances and had his serum tested for antibodies to Borrelia burgdorferi in the blood samples taken at hospital admission. They showed a strong IgM antibody response. Clearly, his symptoms and conduction disturbances were due to Lyme's disease. He was treated with doxycycline and the atrioventricular block disappeared on follow-up ECGs. He had received his pacemaker for atrioventricular block due to Lyme's disease.
It is not the first time that patients themselves made their correct diagnosis. Even physician patients do so, but for me this is the first time that in a group of over 20 physicians during a morning report session, where the ECG's of this 47 year old man with atrioventricular block were shown, nobody suggested a possible diagnosis of Lyme's disease. As their chief I fully took the responsibility. I talked to my colleague and explained that at a later age his pacemaker may be of value.
Clinical errors influence the evolution of careers of many physicians. A diagnosis missed by a group of doctors will be of use for the whole group. On the other hand, discussing cases in large groups of doctors does not guarantee a correct diagnosis of a common disease leading to a common conduction disturbance treated inappropriately with a common device.
University Medical Center St Radboud, Nijmegen, Netherlands
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
To answer your question, I'm turning 50 this month. My heart sounds strong, the echocardiogram looks good, my blood pressure is, to quote my doc, beautiful. So, yeah, they're finding this heart block a head-scratcher given my age and health. I'm so glad my cardiologist immediately thought of LD as the culprit.
Ruth
-------------------- Ruth Posts: 9 | From Maine | Registered: Apr 2006
| IP: Logged |
You could bury me in links and articles and I wouldn't be anything but grateful!
Very interesting stuff you've turned up. I'm having a sit-down with my doc tomorrow and will bring these along. Very, very interesting.
Interesting too that this typically occurs 21 days after exposure. Maybe the night sweats, the flu and the hip pain are completely unrelated and simply boil down to: menopause, the flu, a physically demanding job! I've been trying not to glom all these symptoms together (each of which has presented itself appx. 3-4 weeks apart kind of like clockwork) but it is human nature to seek order out of the seeming chaos!
Thank you so much for your time and research. Until 2 days ago, I didn't even know about MedLine - so my chances of turning up the info you've passed along is nil.
Warm regards,
Ruth
-------------------- Ruth Posts: 9 | From Maine | Registered: Apr 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic