I'm trying to get cleared for surgery to replace my infected catheter. EKG saw "left bundle blockage". I'm waiting here to have echocardio. While reading causes of this, guess what I found. Lyme disease is listed as a cause of it!
Anyone have it? I don't know what I'll do if not cleared! My LLMD says new line must go in PDQ. I'm getting better on Rocephan! I may need it 6+ more months.
I wonder if this "electrical" misfiring is related to my trembling, teeth chatter, low oxygen levels. Dr. ordered O2 for when I'm breathless, asthmatic. But Medicare won't pay. Idiots!
Posted by koo (Member # 30462) on :
Is it left bundle blockage or left bundle branch blockage? Not sure if it matters but I'm pretty sure this is not an exclusively Lyme thing.
What is your O2 sat on room air? Insurance, be it Medicare or otherwise, will not pay for O2 unless your O2 sat is 88% or below on room air. If it is 88% or below on room air, then it has to be proven that with the addition of O2 the O2 sat returns to normal levels.
Posted by Lymetoo (Member # 743) on :
As farraday said, "Lyme is *A* cause."
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by farraday:
I wonder if this "electrical" misfiring is related to my trembling, teeth chatter, low oxygen levels.
- Very likely!
Posted by farraday (Member # 21494) on :
Thanks for the input. Yes, it is left bundle branch blockage. There are a number of causes. I was just surprised to see Lyme listed as one of them. My oxygen sat rates are not that low...at least not regularly. But I was on O2 for years before we learned why I was sick. The guy who delivered it said that people with migraines kept it in their garage. If you crank it up, the headache leaves like magic! It only takes a short while! We will probably buy an oxygen generator as soon as we can. I just have times when I can hardly breathe. I also tremble, choke and stammer at times. Disregulation, I guess. And heart seems to be out of whack, too. I'll keep you posted. I'm blessed with an awesome LLMD, surgeon and cardiologist. They are cooperating to help me. All are pleased with my progress on Rocephan. Me, too!
Posted by karenl (Member # 17753) on :
Yes, but I have not any problems. I was told it is a variant.
Posted by Rumigirl (Member # 15091) on :
You can buy used oxygen concentrators online. The make oxygen from room air, and work quite well. You need to figure out how high an oxygen concentration you want. They go up to 10 (I forget
what the 10 relates to. Most people don't need it that high, but if you get migraines or cluster headaches, you would need it that high.
You might be better off with a port. But that is a somewhat bigger deal to get rx'd and put in. But not that big a deal. I am very happy that I fought hard for one, after having to have my PICC pulled, when it developed a leak after a short time.
Good grief, haven't you been through enough?? Sigh, most of us have been through way too much.
I hope it all goes well and quickly. Great that you are doing well on rocephin.
Posted by koo (Member # 30462) on :
I apologize. I didn't mean to come off as dismissive with regard to heart issues. Actually you kind of freaked me out. I thought it was heart block we had to be concerned about. Now left bundle branch block? I thought that was more genetic but apparently not. As someone who has Lyme cardiac issues all I can say is ugh.
If you can swing a home O2 concentrator that may be the route to go. As someone who has sold O2 in the past, they do NOT make it easy for patients to qualify for O2. Medicare will look for any excuse not to reimburse. I remember our reputable company had a Medicare audit of 20 O2 records and Medicare said all 20 did not pass their muster.
If you go the home concentrator route, 2 liters per minute is pretty standard O2 flow although you surely want to discuss this with your MD.
Posted by farraday (Member # 21494) on :
Wow, great help, folks! Thank you!
First of all, I was cleared for line surgery Tuesday. I guess the bundle blockage wasn't enough to call it off. My LLMD feels that daily IV Rocephan is very essential and other docs agreed.
This will be my 3rd line. Over the years I had 3 ports installed for pain IVs. My chest looks like an anatomy class experiment!
But everyone notices my improvement so who am I to complain!
I was using 2-3 liters of O2 except when migraine hit...then I upped it a lot for a short time. I think we will try to find a home concentrator, as you suggest. I only need it now and then.
One concern we have is the widely fluctuating blood pressure. When all this drama is over we will address it. I'm scheduled to see a well known cardiologist in San Francisco who is Lyme literate. I'll pass on what I learn.
I hope my experiences will be helpful to others. One of my docs and all my family push me to write my autobiography; when I'm well enough I'll get back to it. I've been blessed with an extraordinary life and family. I owe it to them to share it. Maybe it can offer hope to other families who struggle.
Thanks for your support!
Farraday
Posted by Summer3 (Member # 35286) on :
Wow, your other doctors agreed with IV antibiotics? That's a shock!
I have right bundle branch block along with various other heart issues but I believe LBBB is more severe.